Arizona Resources

Since 1971, A New Leaf has provided assistance to those most in need in our community, helping families, children, and adults overcome the challenges they face.

A New Leaf offers 7 distinct pillars of service: domestic violence, housing and shelter, family support, health & wellness, foster care, education, and financial empowerment.

Communities are made stronger when families are safe, have a secure home, are able to provide for themselves and their children, and are ultimately given a chance to make a brighter future for themselves.

By offering these seven pillars of service, A New Leaf is helping households move from crisis to stability, making our community a better place to live.

Abilities Unlimited of Fort Smith, Inc. is a non-profit organization serving individuals with intellectual and developmental disabilities since the early 1960’s. The beginning of the organization was the accumulative effort of several civic minded citizens and families who had vested interest in the welfare of individuals with disabilities. Making it possible for individuals to receive services in the communities where they lived. The organization is committed to providing services that cultivate long-term individual growth. The Day Program at Abilities Unlimited of Fort Smith, Inc. is a place of life-long learning.  Everyday, Monday through Friday, our client’s participate in life skill training.

Ability360 is a 501 (c)(3) non-profit corporation.  Through its comprehensive programs, Ability360 touches the lives of individuals with disabilities and addresses the disability concerns of their family members, co-workers and employers.

Mission Statement

Ability360 offers and promotes programs designed to empower people with disabilities to take personal responsibility so that they may achieve or continue independent lifestyles within the community.

Ability360 is one of five Centers for Independent Living in Arizona, and the largest Center in the state. Ability360 advocates personal responsibility – by, and for, people with disabilities – as a means to independence.  Programs are designed to help consumers achieve self-sufficiency. In addition to the five core service areas, Ability360 provides and promotes numerous other programs and services that help consumers achieve an independent lifestyle.

Ability360 Programs and Services:

• Individual & Systems Advocacy
• Information & Referral
• Employment Services
• ADA Services
• Counsel
• Empowering Youth in Transition
• Home Modifications
• Social and Recreational Opportunities
• Home Care Services
• Sports, Fitness, and Health & Wellness Programs

At Accessibility Medical, Your Access Is Our Mission.  There are no requirements or qualifications necessary to purchase our products and benefit from the affordable new and refurbished medical equipment that we offer.  As a non-profit, Accessibility Medical Equipment is supported by generous donations of medical equipment from individuals and organizations throughout the Kansas City metropolitan community.  In addition, we receive a grant from the Missouri Assistive Technology Advisory Council to support our equipment recycling and reuse program.

With this community support, Accessibility Medical is able to assist individuals with disabilities of all ages, seniors, those with temporary medical equipment needs, and the organizations who serve them to be able to provide equipment that would otherwise be beyond their reach due to a lack of insurance coverage, coverage for the particular items that they need, and to allow limited budgets to stretch further to have a greater positive impact on the lives of those who need medical equipment, whether as a medical necessity or for improved quality of life.

We at Accessibility Medical Equipment believe that access to affordable medical equipment should not be a barrier to recovery, to returning home after a hospital stay, to living a more independent life, or to enjoying a higher quality of life, particularly when a great deal of gently-used durable medical equipment is available within the community.  To that end, we collect donations, inspect, refurbish, clean, and sanitize each item in order to offer affordable, quality, tested refurbished medical equipment in the Kansas City area and beyond.  As additional services to the community, we offer a full range of low-cost new medical equipment items, repair services, rentals and more.  We look forward to working with you and yours should a need for medical equipment arise and thank all those who donate equipment to the program.

Our refurbished equipment is cleaned and sanitized following strict policies which exceed standards prescribed by the CDC and CMS to include sterilization with laboratory grade disinfectant and a 360-degree Fahrenheit commercial steam system.

The Affordable Connectivity Program (ACP) is a U.S. government program that helps many low income households pay for broadband service and internet connected devices. You are likely eligible if your household’s income is below 200% of the Federal Poverty Line, or if you or someone you live with currently receives a government benefit like SNAP, Medicaid, SSI, WIC, Pell Grant, or Free and Reduced-Price Lunch.

If your household is eligible, you could receive:

• Up to a $30/month discount on your internet service
• Up to a $75/month discount if your household is on qualifying Tribal lands
• A one-time discount of up to $100 for a laptop, tablet, or desktop computer (with a co-payment of more than $10 but less than $50)
• A low cost service plan that may be fully covered through the ACP

Only one monthly service discount and one device discount is allowed per household. To receive the connected device discount, consumers need to enroll in the ACP with a participating provider that offers connected devices (Note: not all internet company offer device discounts.) The internet company will provide the discount to the consumer.

ADAPT is like no other organization of which you may be a member. From the national to the local level, ADAPT has an informal structure. There are no money dues, no membership cards.

How do you join? To become involved with ADAPT you must have an active interest in the issue of changing the long term care system, getting people attendant services in the community and getting folks out of nursing homes and other institutions. The key word is active.

ADAPT is an activist organization. This means you are willing to give your time and energy to bring about change in the long term care system and to free our people.

The only dues are the ones you pay in blood, sweat and tears, but the dignity and pride you receive in return can not be valued. When you join ADAPT you are joining one of the finest groups of wild and weird ones you can imagine.

The national organization is made up of local groups and individuals who want to be part of ADAPT and are willing to fight for accessibility and community-based attendant services. Groups cover cities, states, regions but there are many lone warriors out there too.

Once you come to an action, all the pieces will start to fall into place. You will meet folks with a vision of equality, freedom and justice so strong they will make your heart sing!

ADAPT holds training to help form local groups and share with folks the strategies, information and techniques we use. We encourage you to come to one of these training or get some folks together and help us organize one in your neck of the woods.

Founded in 1921, the American Foundation for the Blind (AFB) is a national non-profit organization that creates a world of no limits for people who are blind and low vision. AFB mobilizes leaders, advances understanding, and champions impactful policies and practices using research and data. 

ASGCT was established in 1996 by Dr. George Stamatoyannopoulos, professor of medicine at the University of Washington’s School of Medicine, and a group of the country’s leading researchers in gene therapy. With more than 5,000 members in the United States and worldwide, today ASGCT is the largest association of individuals involved in gene and cell therapy research.

Apraxia Kids is the leading nonprofit that strengthens the support systems in the lives of children with apraxia of speech. Since our inception in 2000, Apraxia Kids has provided support to tens of thousands of families and professionals.

The Arizona Center for Disability Law (ACDL) is a not for profit public interest law firm, dedicated to protecting the rights of individuals with physical, mental, psychiatric, sensory and cognitive disabilities.

We provide a variety of legal services to people with disabilities and/or disability-related problems. We focus primarily on those cases in which individuals have nowhere else to go for legal support.

We provide information, outreach and training on legal rights and self-advocacy, represent individuals in negotiations, administrative proceedings and court, and investigate abuse and neglect.

A staff of six assists the all-volunteer Arizona Developmental Disabilities Planning Council, which is made up of individuals with disabilities, family members, professional stakeholders and state agency representatives appointed by the Governor of Arizona. The 23-member Council meets at least four times a year to discuss issues and vote on which projects to support by allocating our federal funds.

Our mission is to develop and support capacity building and systemic change to increase inclusion and involvement of people with developmental disabilities in their communities through the promotion of self-determination, independence, and dignity in all respects of life.

How we serve Arizona:

• Collecting Data– we identify local developmental disability challenges and solutions.
• Collaborating together– we work with public and private sectors to address issues that are important to people with developmental disabilities.
• Funding grants- we use our grants to fund innovative projects, such as efforts to help Arizonans speak up for themselves or push for community inclusion.
• Advancing inclusion- we educate through events, resources, and social media on ways to include all people who have developmental disabilities in every aspect of community life.
• Promoting self-advocacy– we establish, strengthen, and expand self-advocacy activities among people with developmental disabilities so they will become empowered and self-determined.

We are a coalition of Arizona individuals and non-profits dedicated to ensuring equal access and dignity of individuals with disabilities. Our mission is to advance the rights, choices, and values of people with disabilities through our individual and collective advocacy and education efforts. Our vision is a just world where people with disabilities have equal opportunity to participate fully in all aspects of life.

Benefits of Membership

• Collaborate with like-minded individuals and organizations to promote diversity, non-discrimination, and equity in our communities.
• Contribute your voice and vote to help drive collaborative decision-making.
• Plan and organize education and advocacy initiatives to benefit Arizonians with disabilities.
• Partner to develop and implement best practices for disability rights advocacy and full accessibility.

Who We Serve

• Arizona residents who are unable to read standard print due to blindness or low vision.
• Those who find it hard to hold or handle a print book.
• Individuals who have a perceptual or reading disability.
• Schools
• Libraries, nursing homes, hospitals, or other institutions serving such people

What We Provide 

• Lending library: including audio books and magazines; movies with audio descriptions; and Braille books and magazines by postage free mail
• Loan of special equipment to play audio books
• Audio and Braille book downloads
• Access to NFB-NEWSLINE and over 300 newspapers and magazines by phone and online

Assistive Technology (AT) includes thousands of products that enable persons with disabilities to be more productive and independent in daily activities. Assistive technology products range from simple to complex and can be used at home, work, school and in the community to reduce barriers and increase personal abilities.

At Arizona Technology Access Program (AzTAP), we assist persons with disabilities of all types and ages as well as family members, service providers, employers, and the general public to become better educated about the value and use of assistive technology.

As required by the Assistive Technology Act, our services include:

Services

• Assistive Technology Consultations: An exploration of the specific needs of an individual, including a review of the functional tasks and what Assistive Technology options would potentially be helpful to the individual.
• Information & Assistance: Provide general information, referral and support to persons with disabilities, their family members and rehabilitation providers to explore Assistive Technology options, available support services and with acquiring specific Assistive Technology devices.
• Short Term Assistive Technology Device Loans: Lend Assistive Technology devices for individuals to tryout at work, school or home for the functional task for which it is needed.
• Assistive Technology Device Demonstrations: A guided hands on exploration of an Assistive Technology device to review its specific features, operation and if possible compare it against the features of a similar device (s).
• Assistive Technology & Durable Medical Equipment Reuse Services: Online services assisting with locating, selling, donating or exchanging used Assistive Technology devices and Durable Medical Equipment.
• Public Awareness: Provide trainings and outreach on AzTAP programs and services as well as increase awareness of Assistive Technology and its application for persons with disabilities.
• Training on Assistive Technology: Provide custom designed trainings on Assistive Technology devices, services and topics.
• Technical Assistance: Provide technical assistance and advisement to community organizations, public services and businesses related to Assistive Technology and the service needs of their customers with disabilities.
• Alternative Low Interest Financing for Purchasing Assistive Technology: Provide low interest financial loans with flexible lending terms to persons with disabilities and/or their families to purchase Assistive Technology.

The Arizona Supplemental Nutrition Program for Women, Infants, and Children (WIC) provides nutrition education and breastfeeding support services, supplemental nutritious foods and referrals to health and social services. WIC serves pregnant, breastfeeding, and postpartum women; infants; and children under the age of five.

WIC is available to Arizona’s pregnant, breastfeeding, and postpartum women, infants, and children under the age of five who are at nutritional risk and who are at or below 185 percent of the federal poverty guidelines.

Arizona Youth Partnership builds solid foundations for youth and families by partnering with Arizona communities to prevent and solve local issues such as substance abuse, youth homelessness, lack of educational opportunities, teen pregnancy, and challenging family dynamics.

AZYP was founded in 1990 by a group of concerned Pima County citizens who sought to provide rural communities in the county access to the services available in the Tucson metro area. In 2006, AZYP expanded to serve rural communities across Arizona and seeks to employ a root cause approach to fighting poverty, build healthy, self-sufficient youth and families through
evidence-based prevention programs and community involvement.

Beads of Courage, Inc. is a non-profit organization that is dedicated to improving the quality of life for children and teens coping with serious illness, their families, and the clinicians who care for them through our Arts-in-Medicine Programs. We believe in creating a context for caring transactions to transpire through our community and encouragement programs.

Since 2005, Beads of Courage, Inc. has established collaborative partnerships in caring with hundreds of hospitals nationally and internationally, and worked with several community organizations to make healing happen through the use of beads as a historical art form.

Every Beads of Courage® program integrates the use of beads, the earliest art form known to humans, as visible, tangible symbols of human experiences that need and deserve to be expressed. Every time a bead is given courage is honored, suffering is alleviated, resilience is strengthened, and the experience of human caring is affirmed.

No-cost genetic testing for 66 genes associated with early onset, often bilateral, cataracts is being offered for qualifying US-resident patients through a program sponsored by Travere. Individuals who meet eligibility criteria can receive a no-cost, genetic test, ordered by a qualified healthcare provider, to help determine if they have a genetic form of early onset cataracts. To order kits: https://www.preventiongenetics.com/travere_cataracts

Patients must meet the criteria below:

• Patient age of 18 months to 35 years.
• Patient has current or history of idiopathic bilateral cataract(s) (e.g., not known to be due to infectious causes, trauma, etc.)
• Patient lives in the U.S.

CVI Now is your go-to source for trusted answers about Cerebral/Cortical Visual Impairment (CVI) . Developed by Perkins School for the Blind, CVI Now fosters community and shared connection, and empowers families with CVI knowledge, guidance and tools you and your child need to succeed.

Camp del Corazon is a registered 501(c)3 nonprofit organization that provides year-round experiential opportunities for child faced with the challenges of growing up and living with heart disease. We provide a residential summer camp experience for children ages 7-17 as well as programs that offer opportunities for growth, education, and support for children, young adults, and the families who are living with heart disease. All proceeds are spent on the camp, and its programming, and staffed entirely by volunteers.

We offer our camping program free-of-charge, as the families affected by this disease already incur incredible financial burdens from medical bills and often have to seek private or home schooling due to numerous doctors’ appointments and hospital stays these children require.

Caregiver Action Network (CAN) is the nation’s leading family caregiver organization working to improve the quality of life for the more than 90 million Americans who care for loved ones with chronic conditions, disabilities, disease, or the frailties of old age. CAN serves a broad spectrum of family caregivers ranging from the parents of children with significant health needs, to the families and friends of wounded soldiers; from a young couple dealing with a diagnosis of MS, to adult children caring for parents with Alzheimer’s disease. CAN (the National Family Caregivers Association EIN 52-1780405) is a non-profit organization providing education, peer support, and resources to family caregivers across the country free of charge.

CAN’s Additional Caregiver Websites

Help for Cancer Caregivers 

Help for Cancer Caregivers provides information, education, and support to help cancer caregivers care for themselves and their family members. Born of a unique collaboration of organizations with the shared goal of improving health and well-being of the people who care for people with cancer, Help for Cancer Caregivers is as a stand-alone resource tailored to the oncology community.

Rare Disease Caregivers 

Rare Caregivers is a comprehensive online guide that addresses the distinct needs of family caregivers of loved ones with rare diseases. Rare Caregiver’s resources provide caregivers with tips on helping their loved one as well as themselves.

Children’s Action Alliance (CAA) is an independent voice that identifies and eliminates barriers to the well-being of children and families and creates opportunities through partnerships and policy solutions. CAA is committed to living our values in all the actions we take and decisions we make, ensuring data and facts play a central role. We hold ourselves accountable to these commitments for the children, youth, families, and communities we work alongside.

Tuscan Location 

5049 E Broadway Blvd,
Suite 158
Tucson, AZ 85711

ClinicalTrials.gov is a website and online database of clinical research studies and information about their results. The purpose of ClinicalTrials.gov is to provide information about clinical research students to the public, researchers, and health care professionals. The U.S. government does not review or approve the safety and science of al studies list on this website.

ClinicalTrials.gov:

• Relies on sponsors or investigators to submit and update information about studies
• Lists up-to-date information on clinical research studies and their results with new studies added almost every day
• Includes studies that take place in all 50 states and over 200 countries
• Support laws, regulations, and policies that require sponsors and investigators to publicly share information about clinical trials, including results

Compassion and Choices improves care, expands options, and empowers everyone to chart their end-of-life journey. We develop patient-directed end-of-life healthcare demonstration projects, provide CME- and CEU-bearing training, and advance federal legislative or regulatory reforms, to:

1. Address care for those living with dementia by normalizing advance-care planning so people can pre-claim their right to access exactly the kind of care they want – nothing more and nothing less.
2. Address inequities in end-of-life healthcare including increased access and improved quality for priority populations in partnership and collaboration with the impacted communities.
3. Transform the ER experience for dying patients by broadly implementing an existing model of care that integrates palliative medicine into emergency settings, which is proven to improve outcomes, increase satisfaction, and reduce expenses for patients and providers alike.

Located in New York City, the DISCOVER Program of New York-Presbyterian/Morgan Stanley Children’s Hospital and Columbia Doctors is available to people from around the world. We offer services for patients and families of all ages with significant medical conditions who seek a diagnosis. We provide access to advanced genetic and genomic technologies and exceptional clinical care from world-class specialists who are leaders in their fields, often in a single day or over several consecutive days. We search to provide an accurate clinical diagnosis, and will not stop once the diagnosis is made. You will also have the opportunity to continue care and enroll in cutting-edge research studies with the vision to move beyond your diagnosis and toward the development of innovative treatments.

We provide comprehensive services including review of records, consultation with medical specialists, genetic testing and analysis, case management, and access to research studies.

The Depression and Bipolar Support Alliance (DBSA) envisions wellness for people living with mood disorders (depression and bipolar disorder). DBSA provides hope, help, support, and education to improve the lives of people who have mood disorders. 

DBSA offers peer-based, wellness-oriented support and empowering services and resources available when people need them, where they need them, and how they need to receive them- online, in local support groups, in audio and video casts, or in printed materials distributed by DBSA, our chapters and mental health care facilities across America.

Developmental Enrichment Centers (DEC) are a faith-based, non-profit organization licensed and contracted with Arizona Department of Economic Security, Division of Developmental Disabilities (DES/DDD). Together, our dedicated staff brings over 50 years of combined experience working on behalf of children and adults with developmental disabilities such as Autism, Cerebral Palsy, Epilepsy, and Cognitive Delay.

Funding is provided in part through our contract with the state. Additional support is offered through the generosity of individuals, local businesses, and corporate grants. DEC is recognized as an Arizona Charitable Organization serving the working poor and contributions made to DEC are eligible for the Arizona Charitable Tax Credit.

DEC is committed to meet the social, emotional, and physical needs of each individual served by DEC through both center and home-based services. Recognizing the unique abilities of our clients, both young and elderly, and the challenges they face, we anticipate an expansion of comprehensive services to include residential services, graduated levels of support for medically fragile individuals, in-house therapy, job skills training, and job placement services.

The administration and employees of DEC encourage one another to develop within themselves a core set of values. These values, known as the “fruits of the spirit,” are found in Galatians 5:22 and serve as foundational Christian life principles. Exhibition of these nine attributes is the measure we use to assess all employees.

With a desire to make a difference within the community we serve, our staff is committed to the following: love, joy, peace, patience, kindness, goodness, faithfulness, gentleness, self-control.

Disability Rights Education and Defense Fund (DREDF), founded in 1979, is a leading national civil rights law and policy center directed by individuals with disabilities and parents who have children with disabilities.

Our mission is to advance the civil and human rights of people with disabilities through legal advocacy, training, education, and public policy and legislative development.

The mission of the Double H Ranch is to provide specialized programs and year-round support for children and their families dealing with life-threatening illnesses. Our purpose is to enrich their lives and provide camp experiences that are memorable, exciting, fun, empowering, physically safe and medically sound. All programs are FREE of charge and capture the magic of the Adirondacks. The Double H Ranch is a 501 (c) (3) organization. All contributions are tax deductible to the extent permitted by law. Co-Founded by Charles R. Wood and Paul Newman.

The Double H Ranch is located in Lake Luzerne, New York, in the beautiful Adirondack Park. We are approximately 215 miles north of New York City, NY, approximately 220 miles from Boston, MA, and approximately 174 miles south of Montreal, Quebec.

Our facility resides on 320 acres of land with waterfront access to Lake Vanare. Our facilities include camper cabins that are able to accommodate 126 campers, staff cabins that are able to accommodate a total of 125 staff members and volunteer cabins that are able to accommodate 50 volunteers. Program areas include an indoor and outdoor pool, a high ropes course, archery, horseback riding and pasture, picnic pavilion, stage area, dining hall, Arts & Crafts building/ski chalet, and various other outdoor spaces used for recreational play and opportunities to explore nature.

For nearly 100 years, Easterseals has been the indispensable resource for people and families living with disabilities. Throughout all life’s moments – from the extraordinary to the ordinary and everything in between – Easterseals is here to help people and families realize and reach for their full potential.

Across the nation, we remove physical, cultural, attitudinal, and legal obstacles so people with disabilities have every opportunity to live meaningful and productive lives, on their own terms. We exist to provide the best services and opportunities for people with disabilities in communities nationwide.

Easterseals serves people and families who face a wide range of disabilities, including physical emotional, intellectual, social and educational.

Our mission is to improve the lives of individuals and families facing hereditary cancer. FORCE accomplishes this mission by providing expert-reviewed information to help people make informed medical decisions. Our supportive community of peers and professionals ensures no one faces hereditary cancer alone. FORCE is a champion, advocating for access to care, and better treatment and prevention options.

Family Voices is a national family-led organization of families and friends of children and youth with special health care needs (CYSHCN) and disabilities. We connect a network of family organizations across the United States that provide support to families of CYSHCN. We promote partnership with families at all levels of health care–individual and policy decision-making levels—in order to improve health care services and policies for children.

First Things First is an essential leader and partner in creating a family-centered, equitable, high-quality early childhood system that supports the development, well-being, health and education of all Arizona’s children, birth to age 5.

First Things First works at the state and local levels to give Arizona children the opportunity to arrive at kindergarten healthy and ready to succeed. We invest in proven programs and innovative strategies through grants to community organizations that provide services to children and families. We provide professional expertise and oversight to support local programs and statewide initiatives, and we collaborate with other early childhood system partners to make even more impact.

The Foundation for Blind Children was founded in 1952 by parents of blind children who wanted services for their blind children in Phoenix, instead of having to send them to the State Institution for the Blind in Tucson. The Foundation for Blind Children serves the blind and visually impaired of all ages, from birth to currently 102 years old. As the only agency of its kind in Arizona, the Foundation for Blind Children is an essential resource to families and children with blindness or low vision.

With three Valley locations (East Valley, West Valley and Central Phoenix), we strive to serve as “the” community’s resource for blind, visually impaired, and multi-handicapped children, adults, and their families.

American Association of Kidney Patients (AAKP) has partnered with Emory University to provide complimentary genetic testing for individuals at-risk and families affected by Fabry Disease. AAKP and Emory are able to provide this free service and Fabry disease education thanks to contributions from Sanofi Genzyme and Amicus– companies known for their expertise and commitment in the area of rare genetic diseases.

Need testing? First talk with your doctor about testing, then order a testing kit. Have questions about the program, testing, or forms? Please contact the Emory project team at [email protected] or (404) 778-8518 or (800) 200-1524.

Link to the Kit Order Form: https://www.preventiongenetics.com/AAKP

Additional Information: 

• Genetic testing (either full gene sequencing &/or targeted family testing) for Fabry is offered through PreventionGenetics laboratory.
• Enzyme testing for Fabry is offered through Greenwood Genetics Center.
• You can request kits for either of these testing needs on this site. If you need to order biomarker testing, contact [email protected].

As one of Arizona’s pioneer social service agencies, Friendly House was first established in 1920 as part of a local initiative to assist immigrants in acquiring the citizenship, education and literacy skills necessary to acculturate into the United States. In 100+ years, Friendly House has evolved into a multi-service organization with wide-ranging programs aimed at addressing the pressing needs of our diverse community: Education, Workforce Development, Family Support, Basic Needs and Immigration.

Programs 

• Academia del Pueblo
• Adult Education
• College & Career Readiness
• Emergency Support Services
• Early Childhood Development Center
• Parent Education and Drug Prevention
• Workforce Development

Fun Van is a parenting education program for parents/caregivers and their children ages birth to 5, and is supported by First Things First in the Pinal Region. Each class meets once a week for 11 weeks and includes story time, a craft, playtime, a unique parent session, and a book to keep!

In the parent session, parents and caregivers dive into curricula from two excellent programs. The Parent Educators use the Raising A Reader program to excite children about books and better prepare them for school, and the Early Childhood STEP program to improve family relationships and communication.

Link to registration page: https://www.ajpl.org/funvan/registration/

GARD is a program of the National Center for Advancing Translational Sciences (NCATS) to provide access to current, reliable, and easy to understand information about rare or genetic diseases in English or Spanish.

The GARD website gathers information about rare and genetic diseases from reliable research databases to make it easier for patients, families, and caregivers to find the information they seek. Each disease page also lists resources and organizations that help support the needs of children and adults living with a rare disease.

You can contact GARD by phone or our contact form. You may wish to call if:

• You are having a hard time finding a genetic or rare disease on our website
• You need help finding more information, resources, specialists, or clinical studies
• You or someone you are caring for is undiagnosed

Important: GARD provides information about genetic and rare diseases for your general knowledge and is not a substitute for a doctor’s advice.

Habitat for Humanity is a global nonprofit housing organization working in local communities across all 50 states in the U.S. and in approximately 70 countries. Habitat’s vision is of a world where everyone has a decent place to live. Habitat works together with families, local communities, volunteers and partners from around the world so that more people are able to live in affordable and safe homes. Our advocacy efforts focus on policy reform to remove systemic barriers preventing low-income and historically underserved families from accessing adequate, affordable shelter.

The Centers for Medicare & Medicaid Services, CMS, is part of the Department of Health and Human Services (HHS). On the Health Insurance Marketplace site, you’ll find information about assister programs and tools to help existing and new Health Insurance Marketplace consumers.

Insightful Moments is a community education series consisting of programs and materials covering a variety of important topics, from navigating clinical trials to conquering stress, available in English, Spanish, and French Canadian.

With this new series, we hope to empower patients and their families in their decision making, self-care, and management of the various aspects of their journey. We also aim to make sure the voices of the community are heard and reflected across our programs and materials, and that patients feel supported through direct connection with our Patient Engagement team.

This program provides no-cost genetic testing for familial chylomicronemia syndrome (FCS), a genetic condition which is characterized by high plasma triglyceride levels. No-cost FCS testing is available for patients with a clinical diagnosis of FCS and is being offered to residents of the US and Canada who meet testing eligibility criteria. The test must be ordered by a qualified healthcare provider.

Criteria for Test:

Candidates for this test are patients in the US with severe refractory hypertriglyceridemia – patient must have a minimum of 2 consecutive fasting triglyceride levels ≥750 mg/dL or 8.4 mmol/L in the absence of secondary causes or medical conditions known to cause HTG.

Lasagna Love is a global nonprofit and grassroots movement that aims to positively impact communities by connecting neighbors with neighbors through homemade meal delivery. We also seek to eliminate stigmas associated with asking for help when it is needed most. Our mission is simple: feed families, spread kindness, and strengthen communities.

Lasagna Love was started at the beginning of the pandemic when the founder of Good to Mama was looking for a way to help moms in her community. She and her toddler started making and delivering meals to families in the neighborhood who were struggling, whether that struggle was financial, emotional, or simply a feeling of overwhelm.

To request a meal: https://www.lasagnalove.org/request-a-meal/

Tens of thousands of volunteers, donors, and supporters advance the Make-A-Wish vision to grant the wish of every child diagnosed with a critical illness. In the United States and its territories, a wish is granted every 34 minutes. A wish can be that spark that helps these children believe that anything is possible and gives them the strength to fight harder against their illness. This one belief guides us and inspires us to grant wishes that change the lives of the kids we serve.

MAT is a search engine created by Pharmaceutical Research and Manufacturers of America (PhRMA) that allows patients and their loved ones to search for financial assistance resources available through biopharmaceutical industry programs for those who lack insurance or adequate prescription medicine coverage.

MedlinePlus is an online health information resource for patients and their families and friends. It is a service of the National Library of Medicine (NLM), the world’s largest medical library, which is part of the National Institutes of Health (NIH).

Our mission is to present high-quality, relevant health and wellness information that is trusted, easy to understand, and free of advertising, in both English and Spanish. Anywhere, anytime, on any device—for free.

Provides free commercial airline tickets to those in need for medical care far from home.

Eligibility 

FLY COMMERCIALLY?
Is the patient medically cleared to safely travel on a commercial plane?

MEDICAL APPOINTMENT?
Do you have a confirmed medical appointment requiring air travel? Your treatment site will need to verify your medical appointment date.

14 DAY LEAD TIME?
Is your requested departure date at least 14 days away from today’s date?

FINANCIAL GUIDELINES?
Our financial thresholds are based on household size and are generally three times the listed annual Federal Poverty Guidelines listed by the U.S. Department of Health and Human Services. You can check them out HERE.

Flight Request Application: https://miracleflights.org/flight-request-application/

Our mission is to ensure that individuals with genetic disorders and their families have access to quality care and appropriate genetic expertise and information through facilitating a professional network of genetics clinics, key primary care practices, consumer advocates, and state health department resources.

The MSRGN is one of seven regional networks funded through the Healthcare Resources and Services Administration (HRSA). The MSRGN is focused on the following priorities:

• linkage of medically underserved populations to genetic services
• implementation of quality improvement activities to increase genetic services
• implementation of evidence-based innovative models of telehealth/telemedicine focused on clinical genetics
• provision of resources to providers (genetics and primary care), public health professionals, and individuals with genetics conditions and their families.

The Child and Adult Care Food Program (CACFP) is a federally funded program that is administered and funded by the United States Department of Agriculture (USDA), Food and Nutrition Service (FNS). The purpose of the program is to ensure that eligible children and adults who attend qualifying non-residential care facilities receive nutritious meals.

To accomplish this purpose, CACFP provides reimbursement to qualified caregivers for meals and supplements (snacks) served to participants. While the FNS develops the regulations and establishes the policies needed to conduct the program, state agencies are responsible for administering the program on the State level and for assisting sponsors on the local level.

How to Apply for CACFP: https://www.ncdhhs.gov/divisions/child-and-family-well-being/community-nutrition-services-section/child-and-adult-care-food-program-cacfp/how-apply-cacfp

NC CACFP Local Contact Information: https://www.ncdhhs.gov/divisions/child-and-family-well-being/community-nutrition-services-section/child-and-adult-care-food-program-cacfp/contact-nc-cacfp

The National Organization for Rare Disorders (NORD) Rare Caregiver Respite Program is designed for caregivers (parent, spouse, family member, or significant other) of a child or adult diagnosed with a rare disorder. The program provides financial assistance to enable the caregiver a break from caregiving. Financial assistance will be granted up to $500 annually for those who qualify. Awards may be spread throughout the year or in a single use. Awards are granted on a first come, first served basis to eligible individuals. 

Who is eligible?

• The caregiver must be a US citizen or permanent resident of the United States for at least 6 months with evidence of residency
• The applicant must be willing to undergo a financial evaluation of need and fall within the Program’s financial eligibility guidelines
• The patient for whom care is being provided must have a confirmed rare disease diagnosis

NORD has assistance programs to help patients obtain life-saving or life-sustaining medication they could not otherwise afford. These programs provide medication, financial assistance with insurance premiums and co-pays, diagnostic testing assistance, and travel assistance for clinical trials or consultation with disease specialists.

The National Ability Center (NAC) empowers individuals of all abilities by building self-esteem, confidence and lifetime skills through sport, recreation and educational programs. We are the seekers and explorers, the fun-makers and adventurers. We believe life doesn’t stop unfolding just because we have a disability. We’re adaptive. Our NAC family draws from decades of experience working with people of all abilities, harnessing the power of specialized equipment, techniques, teaching methods and over 1,900 volunteers.

The National Alliance for Caregiving was founded in 1996. Led by our founder Gail Gibson Hunt, a group of national organizations came together to meet the needs of caregivers in an aging America. The National Association of Area Agencies on Aging, the American Society on Aging, the U.S. Department of Veterans Affairs – Office of Geriatrics and Extended Care, Glaxo Wellcome, and the National Council on Aging worked together to create a new association that could address the public policy needs of families and quantify the impact of one of the largest unpaid workforces in our society.

The National Association of Specialty Pharmacy (NASP) is a 501(c)(6) non-profit trade organization and is the only national association representing all stakeholders in the specialty pharmacy industry. The mission of the National Association of Specialty Pharmacy (NASP) is to elevate the practice of specialty pharmacy by developing, delivering and promoting continuing professional education and specialty certification while advocating for public policies that ensure patients have appropriate access to specialty medications in tandem with critical services. NASP supports a free market healthcare system in which all specialty pharmacies compete on the same fair and level playing field, because that is in the best interest of the patients we collectively serve. NASP is committed to working with all stakeholders and policymakers to ensure that all patients have access to the life-saving medications they need and the high touch patient care and support services they deserve from the pharmacy of their choosing.

NCATS offers free materials and resources to help patients, caregivers, patient support organizations, health care providers and scientists learn about rare diseases and help advance research on them.

For most children, communication development and learning occur through vision and hearing. Because deaf-blindness limits access to auditory and visual information, children who are deaf-blind require educational services individualized to their own learning styles and abilities. Most also have one or more additional disabilities or medical conditions, further intensifying educational support needs.

In recognition of the complexity of the disability, the U.S. Congress has authorized programs for children who are deaf-blind as part of education legislation since the late 1960s. The National Center on Deaf-Blindness (NCDB) and state deaf-blind projects are the most current programs—funded under the Individuals with Disabilities Education Act.

NCDB and the state deaf-blind projects exist to help increase the knowledge and skills of educators and families who work with children who are deaf-blind and create sustainable services through systems change.

Most of NCDB’s services are aligned with four national initiatives designed to address key needs of children with deaf-blindness, their families, and service providers.

Technical Assistance

NCDB’s technical assistance (TA) refers to a variety of activities, such as information, training, consultation, and coaching designed to support state deaf-blind projects as they work with practitioners, agencies, and families to address the intense educational needs of children who are deaf-blind.

Information Services 

Our information services involve both information dissemination and product development to serve two key purposes:

1. Resources and tools that support state deaf-blind project activities
2. Information about deaf-blindness and high-quality instructional practices for families and practitioners

These are made available via this website and through library services provided in collaboration with Perkins School for the Blind.

National Child Count 

NCDB compiles data about children with deaf-blindness collected by state deaf-blind projects and publishes an annual report. The report provides valuable information to inform the design and delivery of TA, research needs, and personnel training.

NeedyMeds is a 501(c)(3) national non-profit that connects people to programs that will help them afford their medications and other healthcare costs.

Mission Statement: NeedyMeds educates and empowers those seeking affordable healthcare.

Vision Statement: Our vision is affordable healthcare for all.

How we do it: NeedyMeds, a national non-profit, achieves its mission by providing information on healthcare programs, offering direct assistance and facilitating programs.

In partnership with Prevention Genetics, Travere offers a no-cost genetic testing program for qualifying patients to help identify the genetic cause of cholestasis through a 77-gene panel. This no charge testing is being offered to US residents who meet testing eligibility criteria and must be ordered by a qualified healthcare provider. US physicians only may order a test at: https://www.ourweb2print.com/PG-Cholestasis-Panel/index.html

The mission of PreventionGenetics is to deliver clinical genetic testing of the highest quality at fair prices with exemplary services to people around the world.

In partnership with Zogenix, this No-Cost Genetic Testing Program is available to individuals with a suspected or clinical diagnosis of Thymidine Kinase 2 Deficiency (TK2d) is a rare, inherited, and debilitating myopathic mitochondrial disease that is often fatal and can present at any age. It is a mitochondrial DNA depletion disorder.

Candidates for TK2 testing (Test 12029):

• Patients with suspicious features of TK2 deficiency
• Patient has not had previous genetic testing for TK2 (either as single gene or as part of any previous panel testing)

Candidates for larger panel testing (Test 12031) must have both criteria above for TK2 testing. In addition candidates must have:

• Patient has not yet had previous testing for Limb Girdle Muscular Dystrophy or Mitochondrial Depletion Syndromes
• Patient has clinical features suggestive of either Limb Girdle Muscular Dystrophy or Mitochondrial Depletion Syndrome

Ordering 

1. Determine if the individual meets eligibility criteria and determine if patient is eligible for TK2 or panel testing.
2. Order at testing kit from test from our online Kit Order Form.
3. Collect a blood specimen in the collection tube. For information on ordering specimen kits, see Specimen Collection and Shipping section.
4. The genetic test will be processed at PreventionGenetics and the results will be sent to the ordering healthcare provider approximately 21 days after the lab receives the specimens and all appropriately completed paperwork. The ordering healthcare provider will discuss the results with the patient and/or caregiver.

Precision Genetics in partnership with Travere, Inc. is offering a no-cost genetic testing program for qualifying patients to help identify peroxisome biogenesis disorder-Zellweger spectrum disorder (PBD-ZSD), a rare autosomal recessive disorder caused by mutations in one of 13 PEX genes and characterized by an impaired peroxisome assembly, leading to multiple enzyme deficiencies causing vision, hearing, nervous system, and liver/growth impairment.

This test is appropriate for individuals with clinical symptoms suggestive of a peroxisomal disorder.

Patients must meet one of the criteria below:

• Diagnosed peroxisomal biogenesis disorder − Zellweger spectrum disorder (PBD-ZSD)
• Clinical suspicion of peroxisomal biogenesis disorder − Zellweger spectrum disorder (PBD-ZSD) (e.g. neurological, vision, hearing, or hepatic deterioration)

Tests can be ordered here: https://www.preventiongenetics.com/travere_zsd

Our mission is to provide dynamic programs and services to individuals who have intellectual disabilities and their families, so they may achieve their goals and become fully participating members of our community.

Our Programs: 

• Life Skills
• Employment
• Culinary Training
• Recreation Performing and Fine Arts
• Recreation Health and Fitness
• Recreation Socialization and Respite Activities
• Family Support

Patient AirLift Services (PALS) is a nonprofit that arranges free flights for medical patients requiring medical diagnosis, treatment or follow-up who cannot afford or are unable to fly commercially.

PALS volunteer pilots bear all costs of each medical flight, including fuel, oil, landing fees, ramp fees and other expenses. Patients are not responsible for any air transportation costs.

However, patients must arrange for and pay for local ground transportation at both destination and departure locations, unless PALS specifically provides otherwise.

New Patient Request Application: https://palservices.force.com/form/s/patient

The mission of the Pediatric Cortical Visual Impairment Society (PCVIS) is to advocate for improvement in the quality of life of children with vision loss due to brain disorder, disease, or injury. The mission is restricted to matters concerning the sense of vision.

Pilot Parents of Southern Arizona is committed to providing encouragement and support to families who have children with special needs so that their children can reach their maximum potential within the family and society. All of our programs and services are offered free of charge without regard of the child’s disabilities, age, family income, qualifying conditions or other eligibility factors.

Available services include:

• Advocacy Training (Partners in Leadership)- a leadership training program for parents of children with disabilities and for young adults with disabilities who want to further themselves as self-advocates.
• Sibshop is a workshop providing information to siblings of children with special needs based on a national model developed by Don Meyer.

The mission of PrAACtical AAC (Augmentative & Alternative Communication) is to improve the level of AAC services available to individuals with significant communication challenges by supporting speech-language pathologists and other interested stakeholders.

Raising Special Kids exists to improve the lives of children with the full range of disabilities, from birth to age 26, by providing support, training, information and individual assistance so families can become effective advocates for their children.

Raising Special Kids began in 1979 as a grass-roots effort of families, professionals, and community leaders determined to provide support and information for parents of children with disabilities and special health care needs. Today, Raising Special Kids serves as Arizona’s Family-to-Family Health Information Center, and as Arizona’s Parent Training and Information Center. Helping parents access information about health care, community resources, and support services so they can make informed decisions regarding their children’s care has been our mission from the beginning. We support thousands of Arizona families each year through our programs and services.

Join forces with RARE Science, Inc. a non-profit organization that helps find cures for kids with rare disease. The RARE Bear Project is a community driven initiative and is supported by the ever-growing RARE Bear Army of volunteers that help make one of a kind bears for special one of a kind kids. Gifted RARE bears will have a serial number specifically made for a child in our program. Some RARE bears will also be made for gifts for those who donate a certain amount to our programs to support rare disease research!

To participate  in our RARE Bear Program, please contact your patient support organization, foundation, or group to get all the information you need to enroll in the RARE Bear Program. If your organization is not yet a RARE Science partner but would like to be, please ask them to contact us at [email protected] and we can help them get started!

The Black Women’s Health Imperative (BWHI) launched the Rare Disease Diversity Coalition to address the extraordinary challenges faced by rare disease patients of color. The Coalition brings together rare disease experts, health, and diversity advocates, and industry leaders to identify and advocate for evidenced-based solutions to alleviate the disproportionate burden of rare diseases on communities of color.

The Rare Disease Diversity Coalition is focused on reducing racial disparities in the rare disease community. The Coalition’s work is led by BWHI and a leadership steering committee comprised of advocacy, community, and industry leaders with the following goals:

• Reduce racial disparities in the rare disease community
• Identify and advocate for evidence-based solutions to alleviate the disproportionate burden of rare diseases on communities of color
• Help achieve greater equality within the rare disease community

Our mission is to provide open access to information and resources that facilitate healthcare innovations and offer assistance and comfort to rare disease patients and their caregivers.

The Project

The Info Hub utilizes advanced computing techniques to:

1. Search, organize, and present data related to rare disorders from multiple resources.
2. Identify relationships that will facilitate development of innovative treatments for rare disorders.

The InfoHub is the first deliverable of the three-component “Research Opportunities Initiative.” The project also will include a portal to assist clinicians in the diagnosis of rare diseases and a portal to facilitate the research and development of rare disease treatments.

The Research Opportunities Initiative is being funded by the University of North Carolina System.

The University of North Carolina at Chapel Hill’s Eshelman School of Pharmacy and School of Medicine and NC State University’s Institute for Next Generation IT Systems (ITng) are leading the InfoHub project. Investigators from other UNC System institutions are collaborating, including North Carolina Central University and UNC-Pembroke.

Over 7,000 rare diseases affect more than 30 million people in the United States. Many rare conditions are life-threatening and most do not have treatments. Drug, biologic, and device development in rare diseases is challenging for many reasons, including the complex biology and the lack of understanding of the natural history of many rare diseases. The inherently small population of patients with a rare disease can also make conducting clinical trials difficult. Since the Orphan Drug Act was signed into law in 1983, the FDA has approved hundreds of drugs for rare diseases, but most rare diseases do not have FDA-approved treatments.  The FDA works with many people and groups, such as patients, caregivers, and drug and device manufactures, to support rare disease product development.

Believing that every family deserves access to healthcare, RMHC-Madison creates, finds, and supports programs that directly improve the health and well-being of children and their families. Guiding us in our mission are our core values:

• Lead with compassion
• Focus on the critical needs of families and children
• Celebrate the diversity of our people, families, and programs
• Support the health and wellbeing of families and their children
• Value the tradition and heritage of RMHC and the communities we serve
• Steward resources with accountability and transparency

Faced with a child’s illness, life shifts instantly, and parents enter a world of fear and worry. For parents who don’t live close to the medical care their child needs, there’s an added stress. Living expenses can quickly add up. There could be long drives from home to the hospital, worried siblings, lost jobs, finding and paying for nutritious meals. These are extra burdens no family should have to experience.

With the generosity of our community, the efforts of our volunteers, staff and local McDonald’s restaurant owner operators, we are nurturing the health and well-being of children and their families through three programs.

RMHC of Southern Arizona supports: 

• The Ronald McDonald House
• The Ronald McDonald Family Room 
• The Ronald McDonald Care Mobile Program 

How To Stay

• The child or young adult must be 21 or under and must be receiving medical care at a Tucson hospital, clinic or outpatient facility.
• Families must live 30 or more miles from our location.
• All children under the age of 18 must be with their legal guardian while on the House property at all times.
• There is no charge for families to stay. Donations are accepted.
• In order to ensure the safety of all our guests, we conduct criminal background checks for all prospective guests age 18 and older.

Ronald McDonald House Charities^® of Central and Northern Arizona has been serving families for 36 years. With three Houses in the Valley  – two in Phoenix and one in Mesa – we strive to make life a little easier for families with children facing medical challenges.

Eligibility 

In order to be eligible to stay at RMHC, families must fulfill the following qualifications:

• The child receiving treatment at a local medical facility (inpatient or outpatient).
• The patient must not have reached their 22nd birthday.
• The family’s permanent residence must be outside a 30-mile radius of Ronald McDonald House.

In order to stay at one of our three Valley locations, arrangements and referrals must be made in advance through the Social Services Department at the medical facility where the child is being seen, a physician’s office, or by their staff. Referrals may take up to 24 hours to process.

Established in 1988, Save the Family Foundation of Arizona is a leading provider of housing, case management and supportive services to more than 650 homeless and impoverished families annually throughout Maricopa County. We work to equip families to overcome underlying issues that lead to homelessness – ensuring stable homes, safe children and strong families because of our efforts.

Our programs complement each family’s goals and include career services, budgeting classes, parenting classes, other life-skills classes, and access to in-house mental health and substance abuse support. We also provide drop-in child care, afterschool and summer programs for children – all focused on halting cycles of homelessness and poverty. Supportive services are also available to families residing in Affordable Rental Movement (ARM) of Save the Family’s affordable housing, and we provide eviction prevention services for families throughout the East Valley.

Paradise Valley (PV) Unified School District’s Serving Unique Needs (SUN) Kids program provides a developmentally appropriate setting for children who have been identified with special needs and for children who are developing typically. WE encourage and actively seek the participation of typically-developing children.

Research shows that peer children who participate in a program alongside children with developmental delays will grow to become more independent and empathetic adults. Our students grow together as they develop language, social, and physical skills. The inclusive setting has proven to be a successful experience for all children.

Simply Sayin’ is an award-winning educational app created by the Child Life team at Phoenix Children’s. It uses pictures, sounds and a glossary of terms to facilitate clear conversations about conditions, treatments and medical or healthcare-related experiences.

The app helps you find the right words or phrases to explain and talk about an illness or injury, medical procedures or other areas of interest or concern.

The app’s user-friendly layout includes:

• Ready access to an extensive glossary of medical terms with simple explanations that are easy for kids to understand
• A script feature to prepare children for surgery, with details about specific procedures and photos of main-campus areas and medical equipment that may be used as part of their care
• Interactive drawing boards for various body systems to help kids become familiar with areas and approaches to treatment
• English and Spanish translations

The app is available free of charge in the iTunes or Google Play stores.

Sins Invalid is a disability justice based performance project that incubates and celebrates artists with disabilities, centralizing artists of color and LGBTQ/gender-variant artists as communities who have been historically marginalized. Led by disabled people of color, Sins Invalid’s performance work explores the themes of sexuality, embodiment and the disabled body, developing provocative work where paradigms of “normal” and “sexy” are challenged, offering instead a vision of beauty and sexuality inclusive of all bodies and communities.

We define disability broadly to include people with physical impairments, people who belong to a sensory minority, people with emotional disabilities, people with cognitive challenges, and those with chronic/severe illness. We understand the experience of disability to occur within any and all walks of life, with deeply felt connections to all communities impacted by the medicalization of their bodies, including trans, gender variant and intersex people, and others whose bodies do not conform to our culture(s)’ notions of “normal” or “functional”.

Southwest Human Development strengthens the foundation Arizona’s children need for a great start in life.

The first five years of life are the most critical in a child’s development. At Southwest Human Development, our services improve lives and help families by supporting young children and their caregivers during this important time.

In partnership with families, we provide children with the care, attention and support needed to set them on a path to success in school and life, and help them reach their fullest capabilities.

We are Arizona’s largest nonprofit organization dedicated to early childhood development and our 900 staff members provide 40 programs and services to 140,000 children, families and professionals each year

Special Needs Solutions is a 501(c)(3) non-profit organization devoted to improving the quality of life for the families we serve by designing and making the therapeutic and day-to-day equipment essential for properly caring for their loved ones with special needs.

At Special Needs Solutions we create custom made furniture, clothing, devices, and equipment that help individuals with disabilities progress physically, emotionally, and cognitively. Our goal is to help make it possible for children and adults with special needs to participate as fully as possible in their lives.

Special Olympics is a global movement of people creating a new world of inclusion and community, where every single person is accepted and welcomed, regardless of ability or disability. We are hoping to make the world a better, healthier, and more joyful place- one athlete, one volunteer, and one family member at a time.

The mission of Special Olympics is to provide year-round sports training and athletic competition in a variety of Olympic-type sports for children and adults with intellectual disabilities, giving them continuing opportunities to develop physical fitness, demonstrate courage, experience joy and participate in a sharing of gifts, skills, and friendship with their families, other Special Olympics athletes, and the community.

The Substance Abuse and Mental Health Services Administration (SAMHSA) is the agency within the U.S. Department of Health and Human Services that leads public health efforts to advance the behavioral health of the nation. SAMHSA’s mission is to lead public health and service delivery efforts that promote mental health, prevent substance misuse, and provide treatments and supports to foster recovery while ensuring equitable access and better outcomes.

Sun Sounds bridges the information gap between current print media and people who cannot use it because of a disability. Sun Sounds of Arizona provides audio access to print information to people who cannot read or hold print material due to a disability. Sun Sounds broadcasts the reading of over 200 local and national publications 24/7 from our studios in Tempe, Flagstaff, and Tucson. All reading is done by hundreds of trained volunteers.

Sun Sounds bridges the information gap between current print media and people who cannot use it because of a disability. Sun Sounds of Arizona provides audio access to print information to people who cannot read or hold print material due to a disability. Sun Sounds broadcasts the reading of over 200 local and national publications 24/7 from our studios in Tempe, Flagstaff, and Tucson. All reading is done by hundreds of trained volunteers.

Red Cross volunteers and staff work to deliver vital services – from providing relief and support to those in crisis, to helping you be prepared to respond in emergencies.

The Assistance Fund (TAF) is an independent charitable patient assistance organization that helps patients and families facing high medical out-of-pocket costs. TAF works with individuals who are uninsured and suffering from chronic, life threatening, or rare diseases to assist them financially and educationally. They cover roughly 80 disease programs which are all FDA approved, and have helped over 160,000 people since 2009.

Our Mission 

The Children’s Inn will fully and consistently meet the needs of children and families participating in groundbreaking research at the National Institute of Health. We will:

• Respond to evolving family support needs for pediatric research and clinical care.
• Provide a free, family-centered “place like home”
• Reduce the burden of illness through therapeutic, educational, and recreational programs

Who can stay at The Children’s Inn at NIH?

Patients enrolled in pediatric protocols at the National Institute of Health, up to their 30th birthday, and their families, are eligible to stay at The Children’s Inn.

How much does it cost to stay at The Inn?

There is no charge for families staying at The Inn.

When a loved one is diagnosed with an illness or health concern, you need access to clear, reliable information. The Emily Center at Phoenix Children’s is a place you can go for answers to your health-related questions and more. Our aim is to provide personalized health information, patient education, support, and guidance to help you navigate the healthcare journey.

Visit us on the first floor of Phoenix Children’s Thomas Campus East Building for trusted information and personalized guidance from nurses and other specialists. We staff the Emily Center with bilingual team members to better serve our Spanish-speaking families. Community members and the public are welcome, too. We will offer support and help you learn more about children’s health, mindfulness, resiliency, and overall wellness.

The Emily Center opened in 1990, inspired by a former patient at Phoenix Children’s. As a young girl, Emily Anderson, fought a rare form of adult leukemia for four years. She lost her battle just a few days before her 7th birthday.

During Emily’s illness, her parents wanted to know more about their daughter’s disease. They struggled to find health information presented in easy-to-understand language.

Emily’s parents co-founded the Emily Center to help others in similar situations find reliable, evidence-based health information they could use. They wanted a place where children and loved ones could go to learn about a health condition and care options. They wanted the information to be guided by licensed nurse experts who specialize in pediatric health information and education.

Watch a video about Emily’s story to see what inspired the Emily Center at Phoenix Children’s.

You can also explore our online health information and external health library.

The Guidance Center is a not-for-profit Community Mental Health Center with locations serving Flagstaff and surrounding Northern Arizona communities. We provide a full range of services, which include everything from general mental health counseling for everyday stressors, to our inpatient psychiatric hospital for acute psychiatric emergencies. We provide care to all ages, from birth and up. Care managers, therapists, program supports and peer supports work together to provide individualized care to children, families and adults.

Behavioral Health Services

• Adult Mental Health
• Children and Families
• Applied Behavior Analysis
• Substance Use Treatment
• Outpatient Psychiatric Services
• Crisis Services
• Inpatient Psychiatric Services
• Integrated Care

The Oley Foundation is a national, independent, non-profit 501(c)(3) organization that strives to enrich the lives of those living with home intravenous nutrition and tube feeding through education, advocacy, and networking. The Foundation also serves as a resource for consumer’s families, clinicians and industry representatives, and other interested parties. Programs are directed by the staff and guidance is provided by a board of dedicated professionals and patients.

The Equipment/Supply Exchange Program 

• The goal is to connect families in need of enteral formula, tubing, and other supplies with families who have items to donate. There is no guarantee that any one product will be available at a specific time.
• Our focus is on supplies and equipment related to home tube feeding and IV nutrition. Typical items include: enteral formula, feeding bags, tubing, IV poles, syringes, rand related supplies.
• The person requesting supplies must pay for shipping prior to any products being shipped from the donor; but this should be the only cost associated with the products.

The Partnership for Inclusive Disaster Strategies (The Partnership) is the only U.S. disability-led organization with a focused mission of equity for people with disabilities and people with access and functional needs throughout all planning, programs, services and procedures before, during and after disasters and emergencies.

The Partnership prioritizes equity, access, disability rights, disability justice, and full inclusion of people with disabilities, older adults, and people with access and functional needs before, during and after disasters and emergencies. We recognize that prevention, planning, response, recovery and mitigation must start with and be led by multiply marginalized disabled people who are the most disproportionately impacted.

We offer a wide array of emergency, disaster, and resilience programs and services. We can help communities, organizations, corporations, and governments achieve and maintain equity and full inclusion for people with disabilities and people with access and functional needs before, during, and after disasters and emergencies.

We are the disability-led resource hub for all matters related to people with disabilities throughout all phases of disasters and emergencies.

Cooperative Extension is one of the pillars of The University of Arizona’s Division of Agriculture, Life & Veterinary Sciences & Cooperative Extension. We are about “Improving Lives, Communities and the Economy” by serving as a statewide network of knowledgeable faculty and staff that provides lifelong educational programs for all Arizonans. We are part of a nationwide educational network of scientists and educators who help people solve problems and put knowledge to use. Arizona Cooperative Extension provides a link between the university and the citizens of this state.

Extension means “reaching out,” putting us in all 15 counties and on 5 tribal reservations, connecting them to University of Arizona research and resources. This connection to research-backed knowledge helps people solve problems, adapt to change, develop new skills and carry innovations forward into practice. Our mission is to engage with people through applied research and education to improve lives, families, communities, the environment, and economies in Arizona and beyond.

Addressing Community Needs

We work closely with those we serve to create programs that address community-identified needs. These programs include:

• 4-H Youth Development: As the state’s largest youth serving organization, Arizona 4-H is inspiring the next generation of leaders, entrepreneurs and problem solvers.
• Agriculture and Natural Resources: We have been assisting farmers, ranchers, agency personnel and others involved in natural resource management for over 100 years to increase profits and steward our natural resources responsibly.
• Family, Consumer, & Health Sciences: Our community-specific programs and educational classes help build strong families, strong minds, and strong bodies.
• Tribal Extension: With more than 30% land base in Arizona being Tribal, our initiatives engage Native American communities through education and outreach on development, sustainability, and resiliency.

Lifeline is a federal program designed to provide eligible customers with discounted phone and internet service. To be part of the program first apply to Lifeline to see if you qualify. If yes then contact your phone or internet provider and ask them to apply your Lifeline benefit to your service.

To apply online visit: https://nv.fcc.gov/lifeline.

A paper application is also available: https://www.lifelinesupport.org/wp-content/uploads/documents/get-lifeline/LI_Application_NVstates.pdf

If you live in California, Oregon, or Texas, check with your phone or internet company or visit your state website to find out how to apply for the program.

Also known as the Section 504 Home Repair program, this provides loans to very-low-income homeowners to repair, improve or modernize their homes or grants to elderly very-low-income homeowners to remove health and safety hazards.

Who may apply for this program?
To qualify, you must:

• Be the homeowner and occupy the house
• Be unable to obtain affordable credit elsewhere
• Have a household income that does not exceed the very low limit by county
• For grants, be age 62 or older and not be able to repay a repair loan

USDA Rural Development lists prosperities for sale that are both owned by the agency as well as those being foreclosed on by USDA Rural Development.

Also known as the Section 502 Direct Loan Program, this program assists low- and very-low-income applicants obtain decent, safe and sanitary housing in eligible rural areas by providing payment assistance to increase an applicant’s repayment ability. Payment assistance is a type of subsidy that reduces the mortgage payment for a short time. The amount of assistance is determined by the adjusted family income.

A number of factors are considered when determining an applicant’s eligibility for Single Family Direct Home Loans. At a minimum, applicants interested in obtaining a direct loan must have an adjusted income that is at or below the applicable low-income limit for the area where they wish to buy a house and they must demonstrate a willingness and ability to repay debt.

Applicants must:

• Be without decent, safe and sanitary housing
• Be unable to obtain a loan from other resources on terms and conditions that can reasonably be expected to meet
• Agree to occupy the property as your primary residence
• Have the legal capacity to incur a loan obligation
• Meet citizenship or eligible noncitizen requirements
• Not be suspended or debarred from participation in federal programs

Properties financed with direct loan funds must:

• Not have market value in excess of the applicable area loan limit
• Not be designed for income producing activities

Borrowers are required to repay all or a portion of the payment subsidy received over the life of the loan when the title to the property transfers or the borrower is no longer living in the dwelling.

Applicants must meting income eligibility for a direct loan.

Uncovering Rare Obesity is a program sponsored by Rhythm Pharmaceuticals to help identify rare genetics diseases of obesity. Eligible individuals can receive a genetic test and two genetic counseling sessions (one before and one after the test) at no charge. Participants are responsible for any doctor visit, sample collection, or other costs. Candidates for this test are patients with early onset non-syndromic obesity or patients suspected to have a syndrome with obesity as a predominant feature. Test must be ordered by qualifying healthcare professional and patients must reside in the United States, its territories, or Canada.

Patients of all ages with severe obesity could be eligible for the Rhythm-sponsored genetic testing program.  To be eligible for testing, patients must meet one of the following criteria:

• ≤18 years of age, BMI ≥97th percentile; or
• ≥19 years of age, BMI ≥40, and a history of childhood obesity; or
• An immediate family member of select, previously tested patients; or
• Showing clinical symptoms that suggest Bardet-Biedl syndrome, as the test may help provide additional evidence to support diagnosis

For more information about the program, visit the Uncovering Rare Obesity website: https://uncoveringrareobesity.com/patient/

Unique provides support, information and networking to families affected by rare chromosome and gene disorders.  Patient guides available in English and Spanish.

The UnitedHealthcare Children’s Foundation (UHCCF) is a 501(c)(3) charitable organization that provides medical grants to help children gain access to health-related services not covered, or not fully covered, by their parents’ commercial health insurance plan. Families can receive up to $5,000 annually per child ($10,000 lifetime maximum per child), and do not need to have insurance through UnitedHealthcare to be eligible. UHCCF’s mission is to significantly enhance the clinical condition or quality of life of children covered under a commercial health plan and are 16 years old or younger living in the United States.

Eligibility Requirements: https://www.uhccf.org/apply-for-a-grant/eligibility-requirements/

Link to grant application: https://www.uhccf.org/apply-for-a-grant/apply-now/

Our mission is to end family homelessness by restoring hope and rebuilding lives. Founded in 1964, UMOM is located in Phoenix, Arizona and is an innovative provider of shelter, housing and services for people experiencing homelessness. Every night we provide safe shelter and supportive services for nearly 700 individuals experiencing homelessness – 155 families and 130 single women. We also offer over 550 units of affordable housing across the Valley.

WonderBaby.org is dedicated to helping parents of young children with visual impairments as well as children with multiple disabilities. Here you’ll find a database of articles written by parents who want to share with others what they’ve learned about playing with and teaching a blind child, as well as links to meaningful resources and ways to connect with other families.