The cost of care for rare medical conditions can place a significant financial burden on families. The following resources may help you find the financial support you need.
Does the National Institutes of Health (NIH) provide financial assistance?
The NIH is the nation’s medical research agency. The NIH is not authorized to provide direct financial assistance but can provide medical care to participants who are enrolled in a clinical research study.
In the following sections, you will find nonprofit, government, and community resources that can help with financial assistance. We also encourage you to search the GARD website using the name of your condition. On the GARD disease pages you can find resources in the “Organizations” and “Living With” sections that may be able to provide financial assistance.
Are there any organizations that can provide financial assistance for medical costs related to rare diseases?
Needy Meds is a nonprofit organization that lists programs that help people who cannot afford medications and healthcare costs. NeedyMeds has information about government programs, low-cost or free medical and dental clinics, and prescription assistance. NeedyMeds also has disease-specific financial aid programs. You can contact them directly at 800-503-6897.
The Partnership for Prescription Assistance helps match patients who cannot afford medication to programs that provide free or reduced-cost medicines. In addition, the Partnership for Prescription Assistance has a feature that allows individuals to find low-cost or free clinics in their area.
The Patient Advocate Foundation (PAF) provides case management assistance for the uninsured or underinsured with life-threatening or debilitating illnesses. Services include help with the following: access to care; co-pay assistance; social security disability applications; and insurance appeals. PAF also has a patient brochure titled “A Greater Understanding: Financial Assistance and Debt Crisis Intervention” with general tips for handling the financial difficulties that often follow a complicated medical diagnosis and subsequent treatments. PAF also has an uninsured resource directory and an underinsured resource directory that allow patients to find resources within a given state. You can contact PAF directly at 800-532-5274.
Family Voices aims to achieve family-centered care for all children and youth with special health care needs and/or disabilities. Family Voices has information about the Medicaid waiver programand healthcare financing. You can contact them directly at 888-835-5669.
The National Organization for Rare Disorders (NORD) is a patient advocacy organization for individuals with rare diseases and the organizations that serve them. NORD provides Patient Assistance Programs that provide financial assistance for medications, insurance premiums and co-pays, diagnostic testing, and travel for clinical trials or consultation with disease specialists. In addition, NORD provides links to other financial assistance resources. You can contact them directly at 800-999-6673.
The Assistance Fund provides various services, including education and financial aid, to help patients with chronic or serious illnesses cover the cost of FDA-approved medications. You can contact them directly at 855-845-3663.
Good Days provides help to patients with specific life-altering conditions. Assistance includes help with the cost of medications and travel. You can contact them directly at 877-968-7233.
Are there resources for those with cancer who need financial assistance?
The National Cancer Institute, part of the National Institutes of Health (NIH), has general information for Managing Costs and Medical Information. NCI also has a list of more than 100 organizations that provide emotional, practical, and financial support services for people with cancer.
CancerCare Co-Payment Assistance Foundation helps people cover the cost of co-payments for chemotherapy and targeted treatment drugs. You can contact them directly at 866-552-6729.
Are there resources that specifically help with the cost of dental care?
The National Institute of Dental and Craniofacial Research (NIDCR) has information about finding low-cost dental care.
The Dental Lifeline Network uses a national network of volunteer dentists to provide dental care to those with a financial need who are 65 or older, disabled, or medically fragile. You can contact them directly at 303-534-5360.
NeedyMeds has a feature that allows individuals to find low-cost/free/sliding scale dental clinics in their geographical area. You can contact them directly at 800-503-6897.
How can I learn more about fundraising?
Online fundraising, also known as crowdsourcing, is another method to consider when faced with financial hardship because of a rare disease. Some patients find that friends, family, and community members are willing to contribute financially if they are aware of a difficult situation.
Global Genes has created a toolkit called 5 Essential Tips and Tools for Effective Fundraising. These toolkits provide individuals with information about a variety of topics related to living with and/or advocating for a rare disease.
Where can I learn more about dealing with insurance companies?
The Patient Advocate Foundation has a booklet titled Navigating the Insurance Appeals Process.
How can I learn more about government programs that provide financial assistance?
There are state and federal programs to help people who cannot afford medical care or prescription drugs. USA.gov provides links to federal resources that help with various expenses, including medical care. You can contact them directly at 844-872-4681.
You can find federally funded free or low-cost medical and dental care from the US Department of Health and Human Services Health Resources and Services Administration (HRSA). HRSA’s Maternal & Child Health Bureau helps to increase access to quality health care and services for America’s mothers, children, and families.
Making Home Affordable is a government website designed to help individuals who are behind in their mortgage payments or unsure how to make the next payment. You can contact them directly by calling 888-995-HOPE.
Where can I learn more about applying for disability benefits?
The Social Security Administration (SSA) defines disability on the basis of a person’s inability to work and not on the specific medical condition. The SSA has information about How to Qualify for Social Security Disability Benefits.
The SSA also has a Compassionate Allowances Initiative that speeds up the processing of disability claims for applicants with certain medical conditions that cause severe disability.
How can I learn about community resources?
You may find it helpful to speak with your state or county health department or social workers at your local hospital to request more information on available resources. Religious service organizations and community volunteer agencies such as the Salvation Army, Lutheran Social Services, Jewish Social Services, Catholic Charities, the Kiwanis Club, the Rotary Club, and the Lions Club may offer help. Many of these organizations are listed in your local phone directory. Some temples, mosques, churches, and synagogues may provide financial help or services to their members or those in need in their community.
211 Information is a confidential service provided by United Way Worldwide. The service provides people with local information about human services for everyday needs such as food, housing, and health. This service also provides resources in times of crisis.
How can my story make a difference?
Many people with a rare or genetic disease struggle with medical costs. Families USA has created a form that allows people to share their experiences of dealing with the healthcare system. They are looking for stories of success as well as stories that illustrate the need for further improvements in the healthcare system. Families USA is a national nonprofit organization that works to promote high-quality, affordable health care for all Americans.
Are there resources for those who live outside the United States?
If you live outside the United States and need help with financial assistance for a rare medical condition, GARD information specialists have a list of Patient Advocacy Groups located in other countries.
EURORDIS is a patient-driven alliance representing over 700 rare disease patient organizations in Europe. EURORDIS may have disease-specific resources that can help with the cost of living with a rare disease.
Orphanet is a European reference portal for information about rare diseases and orphan drugs. Orphanet allows you to find patient advocacy organizations that support specific rare diseases in different countries. Click the “Patient Organisations” tab at the top of the specific disease page.
Last updated: 10/12/2017