named programs · 2 · from sources
What they call their work
Awareness & Education Initiative
Conducts outreach and educational activities to raise public awareness about rare diseases and the needs of affected families.
Family Support Program
Provides emotional and practical support to families navigating the challenges of caring for children with rare diseases and genetic disorders.
activities · 1 group
What they do
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Familial Support for Rare Genetic Conditions 1 activity
- Supports families of children with rare diseases and genetic disordersProvides resources and support to families of children with rare diseases, genetic disorders, and extensive medical needs.
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financials · form 990EZ · fy2025
revenue
Total revenue$37K
Contributions & grants$14K38%
Program service revenue——
Investment income——
Other revenue—
expenses
Total expenses$33K
Program expenses—
Admin / overhead—
Fundraising—
Salaries & benefits—
Grants paid out$30K
balance sheet
Total assets$5K
Cash—
Investments—
Liabilities—
Net assets$5K
2 years on record · 2023–2025 · YoY revenue +23.2%
strategies · 1
How they approach the work
Named approaches extracted from this org’s sources. Where others share an approach, follow it to see the full set of orgs running it.
- Family-Centered Supportmethodology: family_centered_supportBy providing coordinated support and resources to families of children with rare and complex medical conditions, we improve awareness and access to care because empowered families are better positioned to navigate fragmented systems and advocate for their children’s needs.