EveryLife Foundation for Rare Diseases
From Unveiling Unicorns — educational information only.
What Is the EveryLife Foundation?
The EveryLife Foundation for Rare Diseases is a nonprofit organization focused on accelerating innovation for rare disease treatments through science-driven public policy and patient engagement.
What EveryLife Offers
- Policy advocacy — advancing legislation for rare-disease research funding, newborn screening, and faster treatment access
- Patient programs — including the RareDisease Legislative Advocates program, which trains patients and caregivers to advocate on Capitol Hill
- Community events — Rare Disease Week on Capitol Hill and scientific workshops
- Research initiatives — partnerships aimed at speeding diagnosis and treatment development
When to Use EveryLife
- You want to advocate for rare-disease policy at the federal level
- You're interested in joining Rare Disease Week or advocate training programs
- You want to understand the policy landscape affecting treatment access
Official Link
- everylifefoundation.org — EveryLife Foundation for Rare Diseases
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Unveiling Unicorns is a 501(c)(3) nonprofit organization focused on raising awareness and providing resources for rare and chronic illnesses.