LGDA on Capitol Hill
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

(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