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Tool

Community + Advocates

People who actually understand. Opt-in, privacy-first, community-safe.

Diagnosis-specific organizations

Foundations and patient orgs for the diagnosis you're navigating.

Caregiver support groups

Online and in-person spaces with people who get it - parents, spouses, adult children, self-managing patients.

Hospital-based advocates

Social workers, chaplains, patient advocates, child life specialists.

State advocates

Disability rights, Medicaid waiver navigators, aging & adult services, Title V.

Rare disease nonprofits

NORD, Global Genes, and condition-specific groups.

Facebook group directory

Curated caregiver-vetted communities.

Mentor matching (coming soon)

Connect with a caregiver further along the road.

Community + advocacy starting points

Vetted national organizations to plug into when you're ready.

Full library
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Forgotten Rare provides educational, organizational, and emotional support only and does not provide medical, legal, insurance, financial, mental health, genetic counseling, or emergency advice. Always consult qualified professionals regarding your specific situation.

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.

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A portion of profits supports rare disease families.