Rare Disease Legislative Advocates (RDLA) is pleased to announce the establishment of the RDLA Advisory Committee


Rare Disease Legislative Advocates (RDLA), a program of the EveryLife Foundation for Rare Diseases, is pleased to announce the establishment of the RDLA Advisory Committee. The RDLA Advisory Committee will work together to ensure that everyone in the rare disease community has a voice and can make an impact on legislation and policy. The Committee of eight members and the RDLA Program Director will meet four times a year to collaborate and serve the rare disease community’s needs in advocacy efforts as well as provide guidance, feedback, and counsel on RDLA activities and events.

Our inaugural RDLA Advisory Committee is made up of a diverse group of fierce advocates from across the United States.

  1. Allison Bones, T.E.A.M. 4 Travis
  2. Lisa Deck, Sisters@Heart
  3. Kathi Luis, Amyloidosis Foundation
  4. Andre Marcel
  5. Sarah Tompkins, EDS Northwest
  6. Tonya Prince, Sickle Cell Association of Houston, Inc.
  7. Steve Smith, WCG Clinical
  8. Marc Yale, International Pemphigus Pemphigoid Foundation

Learn more about the RDLA Advisory Committee and its members at www.rareadvocates.org/about-us/rdla-advisory-committee/.