Empowering Patients & Caregivers
Since 1987, NORD has helped patients who are struggling to afford their medications and care. We may be able to help with the cost of treatment, insurance, diagnostic testing, and travel for clinical care or specialist visits.
Speak to Someone at NORDHow We Can Help
Explore our comprehensive support services designed for you
Program Assistance
Help with medications, insurance premiums, co-pays, diagnostic testing, and travel for clinical trials.
- Medication & Medical Assistance
- Insurance Premium & Copay Support
- Diagnostic Testing Assistance
- Clinical Trial Travel Support
Caregiver Aid
Financial respite assistance so caregivers can take a needed break from the demands of full-time care.
- Respite Care Funding
- RN, LPN, CNA & HHA Coverage
- Non-Professional Caregiver Support
- Emergency Relief Programs
Caregiver Resources
Educational resources, databases, and community tools to support rare disease caregivers.
- Free Webinars & Fact Sheets
- NORD Rare Disease Database
- Organizational Support Directory
- Self-Advocacy Guidance
Educational Support
Financial support to participate in rare disease conferences, programs, and educational events.
- Conference Registration Reimbursement
- Online & In-Person Programs
- Travel & Lodging Assistance
- Advocacy & Support Group Meetings
Stories of Hope
Program Assistance
NORD's RareCare® programs provide financial assistance to help individuals living with rare diseases obtain medication, receive help with insurance premiums and co-pays, get diagnostic testing assistance, and receive travel assistance for clinical trials or consultation with disease specialists.
Search for your rare diagnosis below to see if support is available.
If you find your condition, you can apply directly through that program using the Apply Online button.
Acid Sphingomyelinase Deficiency (ASMD) Medical Assistance
Accepting ApplicationsAcid Sphingomyelinase Deficiency (ASMD) Premium Copay
Accepting ApplicationsAlpha-1 Antitrypsin Deficiency Premium Copay Assistance
Accepting new applications and re-enrollments for current yearAmyotrophic Lateral Sclerosis (ALS) Travel & Lodging Assistance
Accepting Applicationsatypical Hemolytic Uremic Syndrome (aHUS) Emergency Relief
Accepting Applicationsatypical Hemolytic Uremic Syndrome (aHUS) Medical Assistance
Accepting new applications and re-enrollments for current yearatypical Hemolytic Uremic Syndrome (aHUS) Premium Copay Assistance
Accepting new applications and re-enrollments for current year- If you do not see your condition or are not sure what to do next, speak with someone on our team. We can help you understand your options.
- Search for information about your rare diagnosis
Caregiver Support
NORD recognizes that caregivers are essential partners in rare disease management. We offer both financial respite assistance and educational resources to support your caregiving journey.
Caregiver Respite Program
Caring for a loved one demands significant amounts of time, attention, patience, and dedication. Our Respite Program provides financial assistance to enable caregivers a break to attend a conference, event, or simply have an afternoon or evening away from caregiving.
What It Provides
Financial assistance to hire a short-term respite caregiver, who may be a:
- Registered Nurse (RN)
- Licensed Practical Nurse (LPN)
- Certified Nursing Assistant (CNA)
- Home Health Aide (HHA)
- Non-professional caregiver
Who is Eligible?
The caregiver must:
- Be an unpaid, non-professional family member or significant other of an individual with a rare diagnosis
- Be a US citizen or permanent resident of the United States for at least six months, with evidence of residency
- Undergo a financial evaluation of need to determine eligibility within the program's financial guidelines
- Provide full-time care for an individual with a confirmed rare disease diagnosis
How to Apply
Awards are granted on a first-come, first-served basis to eligible individuals. There is no fee to apply. To begin your application, please provide:
- Your (the caregiver's) name, phone, email, and address
- The name, address, and date of birth of the loved one being cared for
- The name and contact information for the physician who may provide confirmation of diagnosis
Caregiver Resources
If you are caring for a person with a rare disease, you know that dedication, time, and patience are required. Practicing self-care is a critical part of caregiving. NORD is here with educational and financial resources to support your efforts.
NORD Resource Center
- Free webinars, fact sheets, infographics, and other helpful educational materials
- Free educational videos covering topics that affect the rare disease community
- Free, interactive webinars on self-advocacy, health insurance, care coordination, specialty pharmacies, and getting involved
NORD Rare Disease Database
- Comprehensive reports on rare diseases written in patient-friendly language
- Links to disease-specific patient organizations and other resources
- Further support for patients and their families
NORD Organizational Database
Search our organizational database to find support through disease-specific organizations in your community.
Educational Support
As the saying goes, knowledge is power. It is vital that people directly impacted by the more than 7,000 rare diseases are armed with the knowledge and information they need to live their best lives while managing their rare condition.
What is the Purpose?
The Rare Disease Education Support Program is designed to offer rare disease patients, their families, and/or caregivers an opportunity to participate in educational programs and conferences that offer rare disease content. NORD's program provides financial support for registration costs and limited assistance with associated travel and lodging costs.
One of the pillars of NORD's mission is educating patients and caregivers to advocate for themselves so they can gain access to accurate diagnoses, clinical research, quality care, and treatments.
Examples of eligible programs include:
- General rare disease educational programs or conferences
- Disease-state specific programs or meetings
- Workshops that support a specific care aspect for rare disease, such as nutrition
- Rare disease advocacy meetings
- Rare disease support group meetings or workshops
Who is Eligible?
- The applicant or applicant's family member must be diagnosed with, or under consideration for diagnosis of, a recognized rare disease
- The applicant(s) must be a US citizen or permanent resident of the United States for at least 6 months
- Assistance is based on eligibility criteria and funding availability
What's Offered?
- Reimbursement for registration costs of rare disease conferences and educational programs (conferences that provide patient or family scholarships are excluded)
- Classes that are online, virtual, or in-person may be eligible
- Limited financial assistance with the cost of travel to a rare disease educational conference or program
- Limited assistance with the cost of lodging should an overnight stay be required
How to Apply
The rare disease diagnosed patient and/or their family or caregiver may contact NORD by phone or email to apply. A RareCare® Patient Services Representative will guide the applicant through the application process, determine eligibility, and award assistance. Awards are granted on a first-come, first-served basis.
7 Kenosia Avenue, Danbury, CT 06810
Contact & Get Help
The NORD Support Helpline directs families to the resources and information they need, answering more than 140,000 calls and emails annually. For over 40 years, NORD's programs have assisted the rare disease community to overcome obstacles and access care.
Fri 8:30 AM–6:00 PM EST
Frequently Asked Questions
Disclaimer
NORD provides this information for the benefit of the rare disease community. NORD is not a medical provider or health care facility and thus can neither diagnose any disease or disorder nor endorse or recommend any specific medical treatments. Patients must rely on the personal and individualized medical advice of their qualified healthcare professionals before seeking any information related to their particular diagnosis, cure, or treatment of a condition or disorder.
