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Find similar grantsRARE Care Patient Assistance Programs is sponsored by National Organization for Rare Disorders (NORD). NORD offers a suite of RareCare® Patient Assistance Programs designed to support individuals living with rare diseases.
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Patient Assistance Programs - National Organization for Rare Disorders 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.
Explore our comprehensive support services designed for you Help with medications, insurance premiums, co-pays, diagnostic testing, and travel Medication & Medical Assistance Insurance Premium & Copay Support Diagnostic Testing Assistance Clinical Trial Travel Support Financial respite assistance so caregivers can take a needed break from the demands RN, LPN, CNA & HHA Coverage Non-Professional Caregiver Support Emergency Relief Programs Educational resources, databases, and community tools to support rare disease Free Webinars & Fact Sheets NORD Rare Disease Database Organizational Support Directory Financial support to participate in rare disease conferences, programs, and Conference Registration Reimbursement Online & In-Person Programs Travel & Lodging Assistance Advocacy & Support Group Meetings “The Patient Assistance Program helped us access life-changing medication that we couldn't afford on our own.
Their support gave our family hope when we needed it most. ” Parent of child with rare disease “As a caregiver, I felt overwhelmed until I found NORD's resources. The support groups and educational materials have been invaluable in helping me provide better care for my mother.
” “The financial assistance program removed a huge burden from my shoulders. I can now focus on my health instead of worrying about how to pay for my treatments.
” 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 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.
Accepting applications from waitlist only Accepting new applications and re-enrollments for current year Accepting new applications and re-enrollments for next year Accepting new applications for current year Not yet accepting applications for 2024 Not yet accepting applications for current year Showing 1–10 of 112 programs Acid Sphingomyelinase Deficiency (ASMD) Medical Assistance Acid Sphingomyelinase Deficiency (ASMD) Premium Copay Alpha-1 Antitrypsin Deficiency Premium Copay Assistance Accepting new applications and re-enrollments for current year Amyloidosis Medical Assistance Amyloidosis Premium Copay Assistance Amyotrophic Lateral Sclerosis (ALS) Travel & Lodging Assistance AT-01 Phase 3 Imaging Study AT01-301D Dosimetry Study atypical Hemolytic Uremic Syndrome (aHUS) Emergency Relief atypical Hemolytic Uremic Syndrome (aHUS) Medical 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 NORD recognizes that caregivers are essential partners in rare disease management. We offer both financial respite assistance and educational resources to support your caregiving 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.
Financial assistance to hire a short-term respite caregiver, who may be a: Licensed Practical Nurse (LPN) Certified Nursing Assistant (CNA) Non-professional caregiver 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 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 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.
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 As the saying goes, knowledge is power.
It is vital that people directly impacted by the more than 10,000 rare diseases are armed with the knowledge and information they need to live their best lives while managing their rare condition.
Important: Please contact the conference or program sponsor before reaching out to NORD for assistance, to see if the specific conference provides financial assistance 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 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 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 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 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. RD Educate Program — Contact Information 860.
556. 2208 or 203. 635.
7486 Mon–Thu 8:30 AM–7:00 PM ET | Fri 8:30 AM–6:00 PM ET NORD, Attention: RD Educate Program 7 Kenosia Avenue, Danbury, CT 06810 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 Mon–Thu 8:30 AM–7:00 PM EST Frequently Asked Questions How do I locate a rare disease specialist? NORD's Information and Resource Services team can help you identify physicians and medical centers that specialize in your specific rare disease.
Call our helpline at 1-800-999-6673 and a team member will work with you to locate a specialist or center of excellence near you. Where do I search for a clinical trial? NORD can point you to clinical trial registries and connect you with research organizations working on your disease.
We also offer Travel & Lodging Assistance for eligible patients who need to travel to participate in a clinical trial or consult with a disease specialist. How do I pay for my medical bills and medication? NORD's RareCare® Patient Assistance Programs offer financial help including medication assistance, insurance premium and co-pay support, and emergency relief for eligible patients.
Contact a Patient Services Representative at 203. 616. 4328 or [email protected] to learn what programs may be available for your diagnosis.
Is there research about my disease? NORD maintains the NORD Rare Disease Database, which provides patient-friendly reports on thousands of rare diseases along with links to disease-specific patient organizations and current research. Our helpline team can also connect you directly with researchers and advocacy groups working in your disease area.
How can I get genetic counseling? Genetic counseling is an important step for many rare disease patients and families. NORD's helpline team can help connect you with board-certified genetic counselors and resources in your area to better understand your diagnosis, inheritance patterns, and family planning considerations.
Are there resources available to assist me? Yes — NORD offers a broad range of assistance programs including financial aid, caregiver respite, and educational event support. The NORD Resource Center also provides free webinars, fact sheets, and videos.
Call our helpline at 1-800-999-6673 or explore the other tabs on this page to learn what's available for your situation. 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 For Patients & Caregivers For Clinicians & Researchers var script = document. createElement("script"); script. src = "https://www.
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render=6Lc_CEopAAAAACjj_tyibG1kHMOp5bOEly7_pvZb"; document. head. appendChild(script); Make 2026 Count: Gift research, care, and advocacy for families everywhere Your gift today fuels progress in the lab, in clinics, on Capitol Hill and for rare families who can’t wait another year for answers.
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According to the current listing, eligibility includes: Individuals living with rare diseases. Specific eligibility requirements vary by program. Confirm the full requirements in the official notice before applying.
RARE Care Patient Assistance Programs is funded by National Organization for Rare Disorders (NORD). Verify program details on the funder's official page before applying.
Start from the official opportunity page linked in this listing — it carries the sponsor's submission instructions.
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