NFL Legends Join Advocates from 49 States for 14th Annual Rare Disease Week on Capitol Hill

Rare Disease Community Will Visit Over 300 Member Offices

WASHINGTON, Feb. 19, 2025 /PRNewswire/ -- The EveryLife Foundation for Rare Diseases (EveryLife Foundation) will welcome advocates from 49 states and Puerto Rico to Rare Disease Week on Capitol Hill, February 24 through February 26, 2025, in Washington, D.C. For 14 years, this multi-day event, hosted by the Rare Disease Legislative Advocates (a program of the EveryLife Foundation), has brought together rare disease advocates from across the country to make their voices heard by their Members of Congress. During their time in D.C., participants – whether first timers or seasoned advocates – are educated on policy proposals impacting the rare disease community and provided opportunities to advocate for policy changes directly to their Members of Congress.

Joining advocates in D.C. later this month will be retired NFL legends and first-time advocates Josh Andrews (Philadelphia Eagles, 2014-18) and Art Still (Kansas City Chiefs, 1978-87), both of whom live with rare diseases themselves. Michael Pearlmutter, CEO of the EveryLife Foundation, believes Andrews and Still joining Rare Disease Week will be impactful: "We are thrilled to have Josh and Art join our team. Rare Disease Week is our community's Super Bowl and to have Josh and Art adding their rare disease stories to ours is an extraordinary opportunity." Andrews and Still will join the community for several Rare Disease Week events and will visit the offices of their Members of Congress.

Rare Disease Week has a full agenda of unique programming that highlights the diversity of the community. Events include:

• Pride in Rare Meet Up
  An opportunity for those interested in the intersection of LGBTQIA+ identity and rare disease patient experiences to meet and discuss barriers and policy pathways to ensuring equitable access to lifesaving diagnosis, treatment, and cures.
• Rare Reels
  A unique event with a kick-off reception to celebrate the art and craft of storytelling through film. During the event, a selection of documentaries will be highlighted that showcase important, diverse stories of and for the rare disease community. Trailers for each selected film will be shown with a panel discussion to follow, and full films will be available to stream online.
• Legislative Conference
  Advocates will learn about the legislative process, legislation currently under consideration by Congress, and effective advocacy techniques to build relationships with Members of Congress and staff.
• Young Adult Rare Representatives (YARR) Meetup
  YARR Members and young adult advocates are invited to an informal gathering, following the Legislative Conference to socialize and discuss the day's events. YARR is a highly motivated group of individuals aged 16-30 who are building the next generation of rare disease advocates.
• Hill Meetings with Members of Congress
  Advocates put what they learned at the Legislative Conference to work during meetings scheduled for them with Members of Congress and staff.
• Rare Disease Congressional Caucus Briefing
  Policy experts and rare disease patients and stakeholders convene to educate Congressional staff, the public, and advocates on issues of importance to the rare disease community.
• Rare Artist Reception
  Awardees from the Rare Artist contest exhibit their art and share their stories with Members of Congress, Congressional staff, and advocates.

In 2024, more than 700 advocates from 49 states and representing over 200 patient organizations attended over 300 meetings with Members of Congress and/or staffers. Shannon von Felden, Vice President of Advocacy at the EveryLife Foundation and head of RDLA, believes that this year's Rare Disease Week will be even bigger: "Each year, more and more advocates from around the country gather with us in D.C. to tell their stories to Members of Congress. This year, we expect our largest turn out yet, as we introduce the EveryLife Foundation and the rare disease community to the new members of Congress, as well as reconnect with our champions in both the House and Senate."

There is no charge for advocates to participate in Rare Disease Week and advocacy training is provided for all who attend. Additionally, the EveryLife Foundation provides travel reimbursements for advocates who may need assistance through the organization's Rare Giving program. In 2024, EveryLife's Rare Giving program provided $185,300 in travel reimbursements to 173 advocates.

The 119^th Congress brings tremendous opportunity and urgency for the rare disease community to build new champions on Capitol Hill. With rare disease innovation at a critical inflection point, ensuring that steady and robust funding into biomedical research and public health infrastructure that support our rare disease community is a driving force for the hundreds of advocates who will be in Washington. Read the EveryLife Foundation's statement from earlier this month.

To learn more about the 14^th Annual Rare Disease Week and all of the associated events, visit EveryLifeFoundation.org.

About the EveryLife Foundation for Rare Diseases:

The EveryLife Foundation for Rare Diseases is a 501(c)(3) nonprofit, nonpartisan organization dedicated to empowering the rare disease patient community to advocate for impactful, science-driven legislation and policy that advances the equitable development of and access to lifesaving diagnoses, treatments and cures.

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

SOURCE EVERYLIFE FOUNDATION FOR RARE DISEASES