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Advocacy for Rare Diseases: Celebrating the 2025 RareVoice Awardees

The EveryLife Foundation for Rare Diseases has made a significant announcement by revealing the recipients of the 2025 RareVoice Awards. These awards celebrate extraordinary advocates who are dedicated to amplifying the voices of patients affected by rare diseases in both state and federal policies. As the community recognizes these leaders, it also stands as a testament to the importance of advocacy in making a tangible difference.

The RareVoice Awards aim to honor individuals and organizations whose efforts have substantially shaped policy outcomes for the rare disease community. The selection process for awardees involves nominations from a diverse array of patients, caregivers, advocates, and organizations, ensuring that the chosen honorees mirror the voices and experiences of the broader community.

Shannon von Felden, the Vice President of Advocacy at the EveryLife Foundation, remarked, "Rare disease advocacy is most powerful when it reflects the voices, experiences, and diversity of the community itself." This sentiment underlines the foundation's commitment to ensuring that the awardees represent a wide spectrum of experiences and backgrounds. The 2025 RareVoice Award recipients are distinguished for their exceptional leadership, unwavering dedication, and significant contributions that have advanced policies aimed at enhancing the lives of individuals living with rare diseases.

In addition to the recognition, each RareVoice Awardee will receive a custom art piece created by artists from within the rare disease community. This artistic recognition not only celebrates their accomplishments but also fosters a connection among those affected by rare diseases, making the ceremony a truly heartfelt occasion. Wherever possible, these artworks are sourced from the awardees' home states, symbolizing a shared unity among rare disease advocates.

The awardees for 2025 include:

• - DEIA Empowerment: Awarded to the Rare Disease Diversity Coalition
• - Federal Advocacy by a Patient or Organization: Awarded to the Foundation for Sarcoidosis Research
• - State Advocacy by a Patient or Organization: Awarded posthumously to Tiffany House
• - Federal or State Advocacy by a Youth or Teen: Awarded to Emily Brubaker

Additional awardees will be unveiled during the upcoming Rare Disease Week on Capitol Hill, including recipients for Federal Advocacy by Congressional Staff and State Advocacy by a State Legislator.

The Rare Disease Week on Capitol Hill, scheduled for February 24–26, 2026, will further highlight the challenges faced by the rare disease community. This gathering is designed to unite patients, caregivers, advocates, researchers, and policymakers to discuss pressing issues and advance solutions that promote innovation, access, and equity for all.

The EveryLife Foundation for Rare Diseases, a nonprofit organization, plays a crucial role in advocating for better health outcomes for the rare disease community. Its mission is not just to advocate for rights but also to promote policies driven by scientific research that can lead to changes benefiting individuals and families impacted by rare diseases. By empowering the community to actively participate in this advocacy, the foundation strengthens ties and illuminates the path forward.

For more information on the 2025 RareVoice Awardees, and to learn about their remarkable contributions within the rare disease community, visit EveryLifeFoundation.org. Stay connected with the organization through their social media channels on Facebook, X, Instagram, and LinkedIn.