Money should not be the barrier
Grants, travel funds, and programs that help rare disease patients afford trial participation.
Usually paid by the trial
Often out-of-pocket
Always ask the study team what costs will be covered before enrolling. Ask specifically: Does the study reimburse travel? Is there a per-visit stipend? What happens if I am injured during the study?
Programs available
The National Organization for Rare Disorders offers multiple assistance programs including disease-specific funds and general rare disease grants for medication, treatment, and travel costs.
rarediseases.org ↗Provides financial assistance to underinsured patients to cover insurance premiums, co-payments, and treatment costs for a wide range of rare and chronic diseases.
healthwellfoundation.org ↗Co-Pay Relief program provides direct co-payment assistance to insured patients who qualify financially and medically. Also offers case management services to navigate the healthcare system.
patientadvocate.org ↗PAN Foundation offers co-pay assistance programs for over 70 disease areas. Covers co-pays, co-insurance, deductibles, and some travel and lodging costs for clinical trials.
panfoundation.org ↗A network of volunteer pilots who donate their time and aircraft to transport patients to medical appointments and clinical trials at no cost. Covers much of the continental US.
aircharitynetwork.org ↗Volunteer pilot network providing free air transportation for patients with financial need who must travel long distances to receive medical treatment or participate in a clinical trial.
angelflighteast.org ↗Free or low-cost lodging near major medical centers for families with children undergoing treatment. Available at 375 locations worldwide. Not only for cancer - available for any pediatric rare disease trial.
rmhc.org ↗If you are enrolled in a trial at the NIH Clinical Center in Bethesda, Maryland, the NIH may cover travel and lodging costs. Ask your study coordinator about NIH transport assistance.
clinicalcenter.nih.gov ↗In the US, unreimbursed travel costs for medical care - including clinical trial participation - may be tax deductible. Keep all receipts. Consult a tax professional about qualifying expenses.
IRS Topic 502 ↗Important tip
Your disease-specific patient advocacy organization often maintains its own emergency fund or financial assistance directory. Search for "[your disease] foundation" to find them. These disease-specific funds are often the fastest to access and most targeted to your situation.
Browse patient organizations by disease ↗