Congratulations to the 2020 RareVoice Award recipients and thank you to the hundreds of advocates who tuned in to watch the live show! All of our nominees are true champions of rare disease families. Each has gone above and beyond to continue their advocacy efforts despite the COVID-19 pandemic.
RareVoice Awards 2020 Awardees
Federal Advocacy – Congressional Staff
Stuart Portman, Senate Committee on Finance
(Advancing Care for Exceptional Kids Act)
Caitlin Van Sant, Representative G. K. Butterfield
(Creating Hope Reauthorization Act/Rare Disease Caucus)
Federal Advocacy – Patient/Organization
(Ensuring Lasting Smiles Act)
State Advocacy – State Legislator
Virginia Delegate Kathleen Murphy
(Rare Disease Caucus/Medical Foods Insurance Coverage)
State Advocacy – Patient/Organization
Jana Monaco, Virginia
(Medical Foods Insurance Coverage)
Federal or State Advocacy by a Teenager
(Living Donor Protection Act)
(Jansen’s Metaphyseal Chondrodysplasia)
Senator Tammy Baldwin, WI
(Ensuring Lasting Smiles Act)
Representative Jaime Herrera Beutler, WA-3
(Newborn Screening Saves Lives Reauthorization Act/
Advancing Care for Exceptional Kids Act)
In case you missed it, please enjoy last night’s #RareVoiceAwards2020 show:
RareVoice Awards Program
Meet the 2020 RareVoice Masters of Ceremonies
Congressional Leadership Award
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 or championed state or federal legislation that benefits the rare disease community.
The awardee for each category will be announced live at the RareVoice Awards on December 10th.
2020 RAREVOICE AWARD PATIENT ADVOCATE/ORGANIZATION FINALISTS
The recipient of this special award will be announced live during the awards show.
2020 RAREVOICE AWARD CONGRESSIONAL STAFF FINALISTS
2020 RAREVOICE AWARD STATE LEGISLATOR FINALISTS
Congratulations to all rare disease advocates nominated this year, including:
Mary Nadon Scott
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
David Eckstein, Office of Clinical Research, NIH
Sarah -Lloyd Stevenson, Faegre Drinker
Lisa Schill, RASopathies Network
Kathleen Tighe, Sanofi Genzyme
Shayne Woods, Office of Rep. Bilirakis
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).
2020 RareVoice Award Sponsorship Opportunities
All sponsorships are tax deductible and support the advocacy of all rare disease patients and organizations through RDLA programs such as Rare Across America, Rare Giving and the Young Adult Representatives of RDLA.
RareVoice Award sponsorships start at $7,500 and space is limited. Please contact Ted Brasfield at email@example.com or Elissa Taylor at firstname.lastname@example.org to discuss how we can partner with you on this impactful event.