EveryLife Foundation Celebrates Rare Advocacy Leaders
Annual RareVoice Awards Recognize Dedicated Advocates Elevating Patient Voices
In a grand announcement, the EveryLife Foundation for Rare Diseases has unveiled the awardees for the prestigious 2025 RareVoice Awards, a cherished event that acknowledges the stellar contributions of advocates who amplify the voices of rare disease patients in policymaking.
These accolades serve to honor individuals and organizations committed to driving substantial policy impacts in the realm of rare diseases. The selection committee meticulously reviewed nominations from patients, caregivers, and advocates across the vast ecosystem of rare diseases to unveil this year's honorees.
Shannon von Felden, the Vice President of Advocacy at the EveryLife Foundation, stated, "The strength of rare disease advocacy lies in representing the genuine voices, experiences, and diversity of our community. The 2025 RareVoice Awardees embody exceptional leadership, commitment, and influence in promoting policies that enhance the lives of those affected by rare diseases. We are privileged to collaborate with these remarkable individuals."
The awardees will receive unique artistic pieces created by artists within the rare disease community, emphasizing local connections and shared experiences within the rare disease realm. This gift of art symbolizes a heartfelt celebration of advocacy and community spirit, elevating the significance of the RareVoice Awards.
Meet the 2025 RareVoice Award Awardees:
- 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
Furthermore, additional awardees will be revealed during Rare Disease Week on Capitol Hill, with categories including Federal Advocacy by Congressional Staff and State Advocacy by a State Legislator.
The acknowledged 2025 RareVoice Awardees will have the honor of being spotlighted during Rare Disease Week on Capitol Hill, scheduled for late February. This significant event gathers diverse stakeholders—from patients and caregivers to advocates, researchers, and policymakers—to tackle the pressing challenges faced by the rare disease community.
Rare Disease Week serves as a vital platform to push for policies that encourage innovation, ensure access to essential resources, and promote equity for individuals living with rare diseases.
About the EveryLife Foundation for Rare Diseases:
Founded as a nonprofit and nonpartisan organization, the EveryLife Foundation for Rare Diseases is dedicated to enhancing health outcomes through evidence-based policies. This organization actively drives change by mobilizing the community to advocate for their rights and addressing the specific needs of rare disease patients.
The committed efforts of the EveryLife Foundation aim to strengthen the rare disease community and ensure that the voices of patients are at the forefront of health policy discussions. To explore more about their initiatives, please visit their official website.
Frequently Asked Questions
What are the RareVoice Awards?
The RareVoice Awards are presented annually to honor individuals and organizations advocating for the rare disease community.
Who are the 2025 RareVoice Awardees?
The awardees include the Rare Disease Diversity Coalition, Foundation for Sarcoidosis Research, Tiffany House (posthumous), and Emily Brubaker.
What is the significance of the awards?
The awards highlight the crucial role of advocacy in shaping policies that affect the lives of those with rare diseases.
How can I participate in Rare Disease Week?
Rare Disease Week on Capitol Hill invites participation from all community stakeholders to discuss challenges and solutions in rare disease policy.
Where can I learn more about the EveryLife Foundation?
The EveryLife Foundation for Rare Diseases provides resources and information about advocacy efforts on their official website.
