Rare Disease Legislative Advocates is pleased to invite you to the Eighth Annual RareVoice Awards

Wednesday, December 4, 2019

6:00 p.m. Cocktail Receptionartboard-1 7:30 p.m. Congressional Toastartboard-1 8:00 p.m. Awards Ceremony
artboard-1 9:00 p.m. After Party Celebration

Arena Stage artboard-1 1101 6th Street, SW artboard-1 Washington, DC

Complimentary Valet artboard-1 Business or Formal Attire

This is a free and widely attended event

The RareVoice Awards is an annual celebration to honor advocates who give rare disease patients a voice on Capitol Hill and in state government. Patient advocates, industry executives, and Congressional and government agency staff gather to honor these outstanding advocates in the rare disease community. 2019 will mark the 8th year of the RareVoice Awards, which is held at the Arena Stage in Washington, DC.

Award recipients are chosen by committee from nominations received from the rare disease community. 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).


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2019 RareVoice Award Patient Advocate Finalists

Thank you to the rare disease community for nominating these outstanding individuals who have gone above and beyond to become rare disease leaders, having advocated for state or federal legislation that benefits the rare disease community.

Federal Advocacy

Isabel Bueso

Isabel Bueso

Elisa Seeger

Elisa Seeger

Madison Shaw

Madison Shaw

Sarah Tompkins

Sarah Tompkins

Ashley Valentine

Ashley Valentine

Brian Wallach

Brian Wallach

State Advocacy

Erica Barnes

Erica Barnes

Frances Broussard Denenburg

Frances Broussard Denenburg

Georgene Glass

Georgene Glass

Barby Ingle

Barby Ingle

Kristen Vanags

Kristen Vanags

Nikia Vaughan

Nikia Vaughan

Teen Advocacy

Aidan Abbott

Aidan Abbott

Emma Detlefsen

Britney Thomas

Britney Thomas

Vienne Weinert Wood

Vienne Weinert Wood

Stay tuned for the announcement of the 2019 RareVoice Master of Ceremonies and the 2019 RareVoice Congressional Staff Finalists!

The honoree in each category as well as the recipients of the Lifetime Achievement and Congressional Leadership Awards will be announced at the 2019 RareVoice Awards on December 4th in Washington, D.C. The event is free and open to the public. Register today.

The RDLA believes that every voice matters and that patients are the key to changing public policy. Thank you to all rare disease advocates who have made their voices heard and continue to advance policies that benefit the rare disease community.

Congratulations to all rare disease advocates nominated this year, including: Brian Baird, Catherine Bear, Sarah Bramblette, Sean Brock, Marni Cartelli, Rasheera Dopson, Lindsey Eubanks, Chifuan Head, Ellyn Kodroff, Dawn Lee-Carty, Brendan Locke, Adrienne Marks, Laura McLinn, Andrea Nelson, Tara Notrica, Kimberly Pang, Robin Powers, Tonya Price, Darlene Shelton, King Singh, Capricia Smith, Samantha Stallings, Greta Stifel, Aimee Thompson and Susan Wilson.

Thank you to the RareVoice nominations committee who performed the difficult task of selecting finalists in each category. Committee members include:

Jennifer Bernstein, Horizon Government Affairs Executive Vice President
David Eckstein, National Institutes of Health Program Director for Strategic Partnerships and Policy Development
Taylor Hittle, Congressman Markwayne Mullin Legislative Director
Cheryl Jaeger, Williams & Jensen, Principal
Angela Ramirez Holmes, Cal Rare President

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For more information or sponsorship inquiries, email Carol Kennedy at ckennedy@everylifefoundation.org

#RAREVOICE

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