Advocates in Action

Rare Disease Legislative Advocates (RDLA) is a program of the EveryLife Foundation for Rare Diseases designed to support the advocacy of all rare disease patients and organizations. RDLA believes that every voice matters and that patients are the key to changing public policy.

150+ Advocates

Engaged in RDLA webinars each month

182 Rare Disease Congressional Caucus Members

25 Senators and 157 Representatives

8 Diverse Members

Established the RDLA Advisory Committee

The National Economic Burden of Rare Disease Study The Foundation commissioned the Lewin Group to estimate the economic impact of rare disease in the U.S. in 2019 and assembled a distinguished steering committee of technical advisors and expert contributors representing government, industry, academia, and rare disease communities. The study included one of the largest surveys thus far of multiple rare disease communities, generating 1,399 fully completed responses from individuals representing about 400 rare disease communities.

Newborn Screening Bootcamp The Foundation and Expecting Health at Genetic Alliance hosted a virtual five-part training series in September for 361 newborn screening stakeholders.

DIRECT COMMUNITY SUPPORT $590,000

The Foundation's Rare Giving program supports individual rare disease patients as well as organizations that engage patients, caregivers and others in the community in public policy.

$286,290 in Grants and Awards

Emily T. Solve M.E/CFS Organization

Science-driven disease organization working to accelerate the discovery of safe and effective treatments for myalgic encephalomyelitis and chronic fatigue syndrome.

Provided to 50 + rare disease organizations

$118,350 in Travel Stipends

Provided to 130 advocates “With this additional support we were able to provide phone and web based meeting tools, spanish translation of materials, an online action center, closed captioning for all events, and many more accommodations to improve accessibility for those disabled by chronic illness.”

Veronica T. RAREis Scholarship Recipient Jessica G. RAREis Scholarship Recipient

$185,000 in Scholarships

Provided to 37 rare disease patients, 23 states represented “I am incredibly optimistic that I discovered my heart tumor, so that I can do some wonderful things in my career as a nurse, and your scholarship will help me get there!” “I am in the midst of a Public Policy and Administration Masters and the #RAREis Scholarship Fund will go a long way towards helping me financially.”

Thanks to the support of Horizon Therapeutics, the EveryLife Foundation established the #RAREis Scholarship Fund – to enrich the lives of adults living with rare diseases by providing support for their educational pursuits.