Forgotten Rare
Tool

Community + Advocates

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

Diagnosis-specific organizations

Foundations and patient orgs for your child's diagnosis.

Parent support groups

Online and in-person spaces with people who get it.

Hospital-based advocates

Social workers, chaplains, child life specialists.

State advocates

Disability rights, Title V, Medicaid waiver navigators.

Rare disease nonprofits

NORD, Global Genes, and condition-specific groups.

Facebook group directory

Curated parent-vetted communities.

Mentor matching (coming soon)

Connect with a parent further along the road.