On Wednesday, March 18, 2015, LGDA President Jack Kelly, joined other members of the Rare Bone Disease Advocacy Alliance (RBDAA) in leading a discussion about ways to improve the quality of life for those affected by rare bone diseases like Gorham’s disease and lymphangiomatosis through a strengthening of the federal government’s response to this national public health issue.
Featured speakers included Representatives Leonard Lance (R-NJ) and Joseph Crowley (D-NY), co-chairs of the Congressional Rare Disease Caucus, and a panel of prominent stakeholders from government, academic research institutions, and the advocacy community.
Check the full list of members of the Congressional Rare Disease Caucus and, if your representative is not a member, encourage him or her to join. Find your representative.
LGDA President Jack Kelly addresses members of the RBDAA & Congressional Rare Disease Caucus March 18, 2015
The following day, LGDA participated in American Thoracic Society’s annual Hill Day, speaking with a number of members of Congress about issues of vital importance to the rare disease community. These meetings are important because they allow rare disease advocates, like LGDA, the opportunity to meet face to face with the lawmakers who decide how the federal budget is allocated and have influence over how the various agencies allocate their funding to discuss policy and budget issues that are important to the rare disease community as a whole. The LGDA favors and strongly advocates for increasing the portion of the National Institutes of Health budget dedicated to rare disease research.
(L to R) Marc Moss MD, Samya Nasr MD, Carolyn Welsh MD, Congresswoman Ileana Ros-Lehtinen (R-FL-27), Jeff Goldstein, Lung Transplant Foundation, Jack Kelly, LGDA American Thoracic Society, Capitol Hill Day, March 19, 2019