#USA #Washington, D.C. #Rare Disease Week #NFL Legends #EveryLife Foundation

Celebrating Rare Disease Week with NFL Legends in Washington, D.C.

The EveryLife Foundation for Rare Diseases is thrilled to announce the 14th Annual Rare Disease Week, taking place from February 24 to 26, 2025, in Washington, D.C. This significant event will feature advocates from all corners of the United States, including 49 states and Puerto Rico, uniting to raise awareness and advocate for policy changes concerning the rare disease community.

Over the past 14 years, Rare Disease Week has emerged as a vital platform for patient advocates to voice their concerns directly to Congress. Participants, whether they are first-time advocates or veterans in the field, will engage in educational programs that outline legislative proposals affecting their community. Each participant is equipped with the knowledge to approach their Members of Congress effectively.

Among the notable attendees this year are NFL legends Josh Andrews and Art Still. Both athletes, who have overcome their own rare disease challenges, will bring their powerful stories to the forefront during the weeklong event. Michael Pearlmutter, the CEO of the EveryLife Foundation, expressed his enthusiasm about their involvement: “Josh and Art's participation is an incredible opportunity for us to amplify our message. This event serves as our community's Super Bowl, and having their support adds a profound layer to our advocacy efforts.”

Highlights of Rare Disease Week Programming

The agenda for Rare Disease Week is packed with impactful events designed to highlight the diverse experiences of the rare disease community:

• - Pride in Rare Meet Up: This gathering aims to spotlight the experiences of LGBTQIA+ individuals navigating rare diseases, discussing barriers and pathways to equitable treatment.

• - Rare Reels: An innovative event celebrating storytelling through film, featuring documentaries that delve into the challenges and triumphs of the rare disease community. Attendees will have the chance to engage in discussions with filmmakers and view selected films online.

• - Legislative Conference: Advocates will gain insights into the intricacies of the legislative process and learn advocacy techniques that can help forge strong relationships with lawmakers.

• - Young Adult Rare Representatives (YARR) Meetup: This informal gathering encourages the next generation of advocates aged 16-30 to come together, share experiences, and cultivate a connected community.

• - Hill Meetings: Advocates will take the discussions from the Legislative Conference into action, meeting with their elected officials to communicate the importance of their stories and needs effectively.

• - Congressional Caucus Briefing: A forum where policy experts and patients can educate Congressional staff on pressing concerns affecting the rare disease community.

• - Rare Artist Reception: Celebrating artistic expression within the rare disease community, awardees will showcase their work and share personal narratives.

In 2024, the event brought together over 700 advocates, highlighting the growing momentum and commitment to advocacy within the rare disease community. Shannon von Felden, Vice President of Advocacy at the EveryLife Foundation, anticipates even higher participation this year as advocates work to re-engage with lawmakers, especially in light of new faces in Congress. The EveryLife Foundation has taken measures to support those who wish to participate, including travel reimbursements through their Rare Giving program, which disbursed $185,300 to 173 advocates in 2024.

The rare disease sector stands at a pivotal moment with innovations in research spurring new opportunities for advocacy on Capitol Hill. As advocates prepare to lobby for enhanced funding and support for biomedical research, their collective voice will be integral in pushing for change. To discover more about the events of the 14th Annual Rare Disease Week, feel free to explore EveryLifeFoundation.org. Through united efforts and shared narratives, advocates hope to inspire action and foster a supportive environment for every individual facing rare diseases.