The EveryLife Foundation for Rare Diseases Announces RareVoice Award Awardees

Annual RareVoice Awards Honors Leaders Who Amplify the Rare Disease Patient Voice

WASHINGTON, Feb. 3, 2026 /PRNewswire/ -- The EveryLife Foundation for Rare Diseases (EveryLife Foundation) announced the awardees for the 2025 RareVoice Awards, which honor exceptional advocates who champion and elevate the rare disease patient voice in state and federal policy.

The RareVoice Awards recognize individuals and organizations whose advocacy efforts have driven meaningful policy impact on behalf of the rare disease community. Awardees are selected by a committee from nominations submitted by patients, caregivers, advocates, and organizations across the rare disease ecosystem.

"Rare disease advocacy is most powerful when it reflects the voices, experiences, and diversity of the community itself," said Shannon von Felden, Vice President of Advocacy at the EveryLife Foundation. "The 2025 RareVoice Award awardees represent our community with their extraordinary leadership, dedication, and impact in advancing policies that improve the lives of people living with rare diseases. We are honored to partner with these community members."

RareVoice Awardees receive a one-of-a-kind Rare Artist piece crafted by artists within the rare disease community. Whenever possible, these art pieces are sourced from the awardees' home states, symbolizing the deep sense of connection and shared purpose among those touched by rare diseases. The combination of recognition, art, and local representation makes the RareVoice Awards a powerful celebration of advocacy and community.

2025 RareVoice Award Awardees include:

• DEIA Empowerment — Rare Disease Diversity Coalition
• Federal Advocacy by a Patient or Organization — Foundation for Sarcoidosis Research
• State Advocacy by a Patient or Organization — Tiffany House (posthumous)
• Federal or State Advocacy by a Youth or Teen — Emily Brubaker

Additional RareVoice Awardees will be announced during Rare Disease Week on Capitol Hill, including recipients in the following categories:

• Federal Advocacy by Congressional Staff
• State Advocacy by a State Legislator

The 2025 RareVoice Awardees will be featured at Rare Disease Week on Capitol Hill, taking place February 24–26, 2026. Learn more about the 2025 RareVoice Awardees.

Rare Disease Week on Capitol Hill convenes patients, caregivers, advocates, researchers, and policymakers to highlight the challenges faced by the rare disease community and advance policy solutions that promote innovation, access, and equity. Registration is now open.

About the EveryLife Foundation for Rare Diseases:

The EveryLife Foundation for Rare Diseases is a 501(c)(3) nonprofit, nonpartisan organization powered by the rare disease community to improve health outcomes by driving change through evidence-based policy, leading science-driven policy and regulatory research, activating the community to advocate for their rights and needs, and strengthening the rare disease community.

To learn more, visit EveryLifeFoundation.org and follow us on Facebook, X, Instagram, and LinkedIn.

SOURCE EVERYLIFE FOUNDATION FOR RARE DISEASES