Forgotten Rare
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Rare Disease Foundation Directory

A searchable map of foundations offering grants for diagnosis, equipment, therapy, travel, and emergencies. We help you understand what you might qualify for and prepare the paperwork gently.

Forgotten Rare provides educational and emotional support only. This platform does not provide medical, legal, financial, insurance, or emergency advice. Always consult your child's medical team, insurance provider, attorney, social worker, or appropriate professional before making decisions.

Not HIPAA compliant. Forgotten Rare is a personal support tool, not a medical records system. Please do not enter information you would not be comfortable storing outside of a HIPAA-protected environment. Avoid posting full identifiers (full name + date of birth + medical record numbers) and any data you are required to keep within a HIPAA-covered system.

AI Funding Assistant

Tell me your child's diagnosis (or suspected diagnosis), what kind of help you need, and your state. I'll suggest organizations to explore and a checklist of what you may want to gather.

Resource directory

Browse, search, and bookmark to your account.

National rare disease foundations

National Organization for Rare Disorders (NORD)

Patient assistance programs and disease-specific funds.

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Global Genes

Resources, community, and education for rare disease families.

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Genetic and Rare Diseases Information Center (GARD)

NIH-curated information on thousands of rare conditions.

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Grants, equipment & therapy funding

UnitedHealthcare Children's Foundation

Grants for treatments and services not covered by insurance.

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First Hand Foundation

Funding for individual children's medical needs.

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NeedyMeds

Searchable database of medication, condition, and equipment programs.

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State & emergency support

State Title V / CYSHCN programs

Every state has a Children with Special Health Care Needs program.

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Patient Advocate Foundation Co-Pay Relief

Co-pay assistance for specific diagnoses.

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Preparation checklist

A gentle starting list. You don't need everything to begin.

  1. Diagnosis paperwork (clinical letter or genetic report)
  2. Physician letter of medical necessity
  3. Proof of residency
  4. Insurance card and denial letters (if any)
  5. Income documentation, if commonly requested
  6. Timeline of upcoming deadlines

Common questions to ask

  • • What should I ask?
  • • What documents may I need?
  • • How do I prepare?
  • • What usually happens next?
  • • How do I organize this?
  • • How do I ask for help?