The EveryLife Foundation for Rare Diseases will welcome advocates from 49 states and Puerto Rico to the 14th Annual Rare Disease Week on Capitol Hill, taking place from February 24 to February 26. This event, hosted by the Rare Disease Legislative Advocates, aims to amplify the voices of the rare disease community in discussions with Members of Congress.
Joining the advocates this year are retired NFL legends Josh Andrews and Art Still, both of whom live with rare diseases. “We are thrilled to have Josh and Art join our team,” said Michael Pearlmutter, CEO of the EveryLife Foundation. “Rare Disease Week is our community’s Super Bowl, and having Josh and Art share their stories is an extraordinary opportunity.”
The event will feature a variety of programs, including the Pride in Rare Meet Up, which addresses the intersection of LGBTQIA+ identity and rare disease experiences, and Rare Reels, a film event showcasing documentaries about the rare disease community. Additionally, the Legislative Conference will educate advocates on the legislative process and current policy proposals.
Throughout the week, participants will engage in meetings with lawmakers to advocate for policies that support the rare disease community. These discussions will focus on increasing funding for rare disease research, improving access to treatments, and ensuring that patients receive timely diagnoses.
The event will also include a Rare Artist Reception, celebrating the creativity and resilience of individuals living with rare diseases. This reception will feature artwork created by rare disease patients, highlighting their unique perspectives and experiences.
For more information, visit EveryLife Foundation’s website.