Today, the EveryLife Foundation for Rare Diseases announced the 2020 RareVoice Abbey Award recipients for Congressional Leadership: Senator Tammy Baldwin (WI) and Congresswoman Jaime Herrera Beutler (WA-3). The awards will be presented during the RareVoice Awards show which honors advocates who give rare disease patients a voice on Capitol Hill and in state government. The celebration, now in its ninth year, is hosted by the Rare Disease Legislative Advocates, a program of the EveryLife Foundation.
“Senator Baldwin, Congresswoman Beutler, and all of our 2020 RareVoice Award nominees are true champions of rare disease families. Each has gone above and beyond to continue their advocacy efforts despite the COVID pandemic,” said Julia Jenkins, EveryLife Foundation for Rare Diseases Executive Director. “It’s important that we take time to recognize them and the impact that they have made on behalf of the 30 million Americans living with rare disease.”
Awardees for other categories will be announced live during the event broadcast, including Federal Advocacy – Congressional Staff, Federal Advocacy – Patient Advocate or Organization, State Advocacy – State Legislator, State Advocacy – Patient Advocate, and Teen Advocacy. A special Artist-to-Advocate award will recognize how one artist made an impact through art.
Nominees for each category were submitted by the rare disease community. Twenty-four finalists were selected, ranging in age from 15 to 78, hailing from nine different states, and representing more than 11 rare diseases.
Awardees receive an “Abbey” statuette commissioned specially for the RareVoice Awards, and named for Abbey Meyers, founder of the National Organization for Rare Disorders (NORD).
Patient advocate Ryan Colburn and EveryLife Foundation Associate Director of Alliance Development Elissa Taylor will serve as masters of ceremonies.
The RareVoice Awards will be livestreamed on December 10th from 7:00 p.m. to 8:00 p.m. ET at RareVoiceAwards.org.
View the complete list of 2020 RareVoice Award nominees at RareVoiceAwards.org.
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About the EveryLife Foundation for Rare Diseases
The EveryLife Foundation for Rare Diseases is a 501(c)(3) nonprofit, nonpartisan organization dedicated to empowering 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.
A disease is defined as rare when it affects fewer than 200,000 people in the United States. On average, rare disease patients must wait an average of six years after symptoms first present before receiving a proper diagnosis. Ninety-three percent of the 7,000 known rare diseases have no U.S. Food and Drug Administration-approved therapies. Fifty percent of rare disease patients are children, thirty percent of whom will not live to see their fifth birthdays.
