We often hear from the rare disease community looking for financial support, including help with medical expenses, grants, scholarships, and travel. Below is a list of related resources. We also encourage you to check if a disease-specific organization or foundation exists, as they may offer more direct guidance.
To suggest a resource or get help finding a disease-specific organization, email info@rareadvocates.org.
Please note that these organizations are not affiliated with the RARE Foundation, and we are unable to provide direct financial, medical, or legal support.
General Rare Disease Support
General Disease Information
- NIH/NCATS Genetic and Rare Diseases Information Center (GARD) – Provides reliable information on rare diseases and is a helpful place to look up whether a condition is considered rare.
Support & Connections
- Child Neurology Foundation – Provides support and resources for families navigating a child’s neurologic condition, including peer connections and guidance on care, school, and transitions.
- Global Genes RARE Concierge – Provides free, personalized support to help individuals and families navigate rare disease and connect to resources and services.
- National Organization for Rare Disorders (NORD) – Offers patient assistance programs and disease information.
- Undiagnosed Diseases Network Foundation – Supports individuals with undiagnosed or ultra-rare conditions through research, diagnostic programs, and navigation support.
Clinical Trials and Research Opportunities
ClinicalTrials.gov – A searchable database of clinical trials to find research studies by condition and location.
Mental Health Support
- Give an Hour – Provides free mental health support through licensed professionals and promotes integrating mental health into overall care.
Navigating Insurance & Benefits
Insurance & Benefits
- Patient Advocate Foundation – Provides case management and support to help individuals navigate access to care, insurance, and financial challenges.
- Triage Health – Provides free education on legal and practical issues to help individuals navigate health care, including topics like insurance, employment, and government benefits.
Support from Pediatric to Adult Care
- Got Transition – Provides resources and guidance to help youth and young adults with chronic conditions transition from pediatric to adult health care.
Financial Assistance
Help with Medications & Insurance Costs
- Accessia Health – Offers education and financial support for essential medical expenses.
- The Assistance Fund – Offers copay, coinsurance, deductible, and other health-related expense support through disease-specific programs
- Chive Charities – Provides grants for therapy items, mobility items, and medical equipment not covered by insurance.
- Good Days – Provides financial assistance, advocacy, and education through disease-specific programs.
- HealthWell Foundation – Provides assistance to help insured individuals cover copays and other out-of-pocket medical expenses.
Navigation & Support for Medical Expenses
- Help Hope Live – Community-based fundraising program to support uninsured medical expenses.
- NeedyMeds – Helps identify affordable health clinics, diagnosis-based assistance programs, and resources to access medications.
- Partnership for Prescription Assistance – Connects qualifying patients to programs that help reduce the cost of prescription medications.
Nonprofit Grants
- RARE Community Grants – Microgrants provided by the RARE Foundation to support public policy and advocacy in the rare disease community, including events, tools, and resources.
Education & Scholarships
Navigating College
- Accessible College – College preparation and transition support for students with physical disabilities and health conditions.
Scholarships
- Community Scholarships – Community Scholarships offered by the RARE Foundation to support students in the rare disease community.
Scholarship Search Tools
- Scholarships.com – Comprehensive scholarship search tool, featuring many disease-specific scholarships.
Medical Travel Assistance
Flight Support
- Air Care Alliance – Connects patients to volunteer pilot groups, offering free flights on small private planes.
- Air Charity Network – Provides free flights with volunteer pilots for medical travel.
- Miracle Flights – Provides free commercial airline tickets to support children in need of medical care.
Air & Ground Support
- Mercy Medical Angels – Provides free air and ground transportation for medical care.
Contact Us
If you have any questions about the resources on this page or if you have additional resources you think would be helpful to the rare disease community, please contact us at programs@rareadvocates.org.
