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.
See our guides on How to Get Involved in Research and Help with Travel Costs for more information about participating in clinical trials and finding financial assistance with the cost of travel.
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 Pharmaceutical Research and Manufacturers of America (PhRMA) created a tool that allows patients to search for financial assistance resources offered through various biopharmaceutical industry programs to help cover the cost of medications.
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 National Financial Resource Directory that allows 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 a map to help you find the Family-to-Family Health Information Center in your state. 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 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 toolkits that provide individuals with information about a variety of topics related to living with and/or advocating for a rare disease. They have one toolkit called 5 Essential Tips and Tools for Effective Fundraising.
Where can I learn more about dealing with insurance companies?
Global Genes has a booklet titled Navigating Health Insurance.
Last updated: 6/12/2019