Minnesota Resources

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.

American Bar Association Free Legal Answers is a virtual legal advice clinic in which qualifying users can post a civil legal question to be answered by pro bono attorneys licensed in their state. Question topics include family, divorce, custody, housing, eviction, homelessness, consumer rights, financial, work, employment, unemployment, health and disability, civil Rights, income maintenance, juvenile and education law.

By using this website, you are asking a lawyer to give you legal help on your specific legal questions. They will be your lawyer for this limited purpose and will not do anything for you other than provide this help. The lawyer will answer your questions through the website and does not have to separately email you an answer or have a phone call or meeting to answer your questions. If the lawyer leaves your question open for a response from you, you will have 10 days to reply before the question closes. When the lawyer is finished answering your question, the lawyer will no longer be your lawyer.  If you have a court date or you need to file something with the court by a specific date, a lawyer may not answer your question in time.  You should keep looking for a lawyer while you wait to see if a lawyer will answer your question. Unfortunately, not all questions posted to the site will receive an answer. If an attorney cannot assist you, an administrator will notify you. You can use the website to ask 3 different legal questions per year.  You can’t create a new account to ask additional questions.  You must meet our rules every time you use the website.

Eligibility

You can use this website IF all of these are true for you:

• Your income is low for a family the size of yours.
• The value of your checking account, savings account, stocks or bonds are low.
• You aren’t in jail or prison.
• Your legal problem isn’t related to a criminal charge.
• You don’t already have a lawyer to help you with your legal problem.
• You are an adult.

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.

Angel Flight is a non profit organization consisting of network of volunteer pilots who donate their time and aircraft to provide free private non emergent air transportation for the medically and financially needy to distant medical institutions. Note Angel Flight is not a air ambulance. Patients must be ambulatory meaning they must be able to walk independently, enter and exit the the plane with little or no assistance and require no medical care en route.

There are several branches of Angel Flight. The state of Wisconsin is served by Angel Flight Central along with Kansas, Missouri, Iowa, Nebraska, Illinois, Minnesota, Indiana, South Dakota and North Dakota.

To request a flight please go to the following link: https://afids.angelflightcentral.org/flight-request

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.

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.

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.

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

Complex Child is a monthly online magazine written by parents of children with special healthcare needs and disabilities. It is intended to provide medical information, along with personal experiences, in simple language that other parents can understand. Articles are on a wide variety of topics ranging from basic information on medical conditions and treatments to advice on how to beat insurance company denials.

Complex Child is FREE! The new edition and all archived editions and articles are completely free, but are only available online.

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.

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.

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.

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.

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].

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.

Kids Mobility Network is a 501(c)3 non-profit organization providing children with disabilities with durable medical equipment such as wheelchairs, walkers, and other medical equipment. We operate our organization with caring and integrity.

We value and respect our community, our donors, and the families we serve. We foster an environment to optimize the mobility, safety and independence of children with disabilities to promote personal growth and wellbeing. We believe that all children should have the opportunity to optimize their abilities to safely access and interact in their communities. Through hard work, effective use of adaptive technology, and comprehensive service, Kids Mobility Network is changing the lives of children with disabilities and their families.

Through integrity, caring, teamwork, and leveraging proven business principles, Kids Mobility Network maximizes satisfaction of the families served and strives to maximize community benefit with the donations.

The Kids Mobility Network Application Process

• Download the Kids Mobility Network Application
• Complete the application in its entirety
• Be sure to provide a letter of medical necessity from the child’s doctor or healthcare professional
• Submit the application to Kids Mobility Network
• Someone may contact you to discuss the applicant’s needs to help determine the best equipment solution
• Once matched, we’ll contact you to arrange a fitting
• At delivery, we ask families to pay a small service fee to help us keep our organization operating. While we give our clients the expensive equipment, the service fee is necessary to cover the expenses of reconditioning, sanitizing, customizing the chair to the applicant’s specific needs, and providing a full seating service. For details about our service fees, visit our FAQ’s page.

CES Waiver Program 

If your child is covered under Colorado’s CES Waiver, you have even more opportunities to get equipment that is ordinarily not covered by insurance such as adaptive tricycles or jog strollers to name just a couple of popular items.  Kids Mobility Network works with the CES Waiver program to get therapeutic recreation equipment for your child.  We take care of everything so the process is very simple.  Be sure to mention this when completing your application.  To learn more, visit the CES Waiver Page

Important Information About Shipping Equipment 

Kids Mobility Network is able to ship product to locations in the United States of America (USA). Kids Mobility Network does not ship outside the USA. Because the equipment provided is typically bulky and heavy, shipping logistics can be challenging. Most items are shipped via freight carrier due to the size and weight. Freight carriers prefer to ship to business addresses with shipping docks that they can back their large trucks. Freight carriers charge very high service charges for delivery to residential addresses, deliveries that require a lift gate, deliveries to limited access addresses, as well as other charges. Typically this results in shipping fees of several hundred dollars. Furthermore, because Kids Mobility Network utilizes volunteers for operational tasks and currently does not have any warehouse employees, shipping can take several weeks. An alternative to shipping is to travel to Denver to pick up equipment. We welcome you and your family to visit our offices to get expert seating and positioning, as well as more timely delivery of equipment. Also it is important to note that airlines by law must accommodate your medical equipment free of charge.

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/

Provide free air transportation to financially distressed children or adults for non-emergency medical or humanitarian need far from home (between 100-1000 miles from home).

LifeLine Pilots’ mission is to coordinate free air transportation, through volunteer pilots, for passengers with medical and humanitarian needs far from home.

Passenger Qualifications:  https://lifelinepilots.org/patient-information/

Flight Request Application: https://missions.lifelinepilots.org/flight-request?_ga=2.264702668.2100404422.1657285792-217394662.1657033121

The Lily’s Hope Foundation is a 501(c)(3) non-profit organization that supports babies, children, and their families with unexpected and urgent needs due to premature birth. We support our NICU families by providing them with essential items since they have been unable to prepare for their child’s early arrival. Our Lily’s Hope Families that are in the middle of this medical crisis are referred to us by hospital case workers, hospital staff, and word of mouth. We work with each individual family to answer their specific needs by way of our Packages of Hope. Our Packages of Hope include items that can often be expensive and difficult to find. Examples of the care package contents are micro-preemie/preemie clothing, preemie diapers, car seats or car seat beds, bassinets, gift cards for use toward transportation to the NICU, and much more.

To request support: https://www.lilyshopefoundation.org/packageofhope

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/

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

In partnership with Prevention Genetics, Inozyme offers a global, no-cost genetic testing program for the ENPP1 and ABCC6 genes; both of these genes are implicated in two rare, severe calcification disorders, known as ENPP1 Deficiency and ABCC6 Deficiency, respectively, (sometimes called generalized arterial calcification of infancy [GACI] and autosomal recessive hypophosphatemic rickets type 2 [ARHR2]). The test must be ordered by a qualifying healthcare provider. Information about eligibility criteria and ordering the genetic test can be found by 2 options:

• • • Calling 715-387-0484, choose option 2 and mention Program #SP-051
    • Visit https://www.preventiongenetics.com/specialOrders?sp=sp051

Inozyme Pharma also sponsors global, no-cost genetic testing for the ABCC6 gene associated with Pseudoxanthoma Elasticum (PXE) through Precision Genetics. The test must be ordered by a qualified healthcare provider for patients who meet testing eligibility criteria. To order a test kit visit: https://www.preventiongenetics.com/inozyme_abcc6

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

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.

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.

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.

Rare & Ready: A Genetic Condition Coalition believes state policies must make sure that patients with rare or genetic conditions can get the care they need. These patients deserve access to new FDA-approved therapies as soon as they are available. We need to mitigate state Medicaid program hurdles that limit access.

Every voice matters! Share your experience and contact us to join our coalition. Help us make progress in having an impact on rare disease policies. Attend our educational and collaborative webinars on a variety of topics with experts and like-minded individuals. Rare & Ready welcomes EVERYONE to join us! Whether you are a patient, caregiver, healthcare provider, or member of a patient advocacy group, your voice matters. Together we can change Medicaid policy to get the access we need now.

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.

Rx Outreach is a mail order pharmacy that ship genetic medications in 90 to 180 day quantities for reduced prices directly to the provider’s office or  patients’ homes. Qualifying individuals have a income 400% below the federal poverty line.

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”.

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 of Arizona is available to any person in the United States with a print disability via the web at https://www.sunsounds.org, TuneIn Radio, Smart Home Device, and Sero app.

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.

We are available on the radio, smart home devices, and internet, as a live stream or podcast. Sun Sounds also helps listeners in hospitals and residential facilities around the state. There are many ways to receive service from Sun Sounds. Choose one that works for you!

Sun Sounds bridges the information gap between current print media and people who cannot use it because of a disability.

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.

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.

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/

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.

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.