EveryLife Foundation for Rare Diseases

We empower the rare disease patient community to advocate for impactful, science-driven legislation and policy that advances the equitable development of and access to lifesaving diagnoses, treatments, and cures.

Volunteers interact with other members of the rare disease community to encourage them to build community, share their story, and know that they are not alone. Volunteers may also create engagement materials, such as support cards and care messages for rare disease patients at medical facilities, such as NIH. Volunteers may also help in the Rare Hub, a shared office space for rare disease organizations in the heart of Washington DC. Tasks around the office include decorating, sorting mail, preparing and packing for events, and mailing items to patients.