Capitol Hill Briefing
On Wednesday, March 18, 2015, LGDA President Jack Kelly, will join 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 include 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, including:
• Joan A. McGowan, PhD, Director, Division of Musculoskeletal Diseases at the National Institution of Arthritis and Musculoskeletal and Skin Diseases, National Institutes of Health
• Jay R. Shapiro, MD, Director, Osteogenesis Imperfecta Program, Kennedy-Krieger Institute, Johns Hopkins Hospital, Professor in the Department of Physical Medicine and Rehabilitation at the Johns Hopkins University
• Jack Kelly, President, Lymphangiomatosis & Gorham’s Disease Alliance
• Tracy Smith Hart, Chief Executive Officer, Osteogenesis Imperfecta Foundation
• Elspeth Birdsdall, Chair, The OsteoPETrosis Society
The RBDAA is a membership organization that serves as a voice on behalf of Americans with rare bone diseases by facilitating and sustaining an open dialogue with Congress and the Executive Branch about the need to increase federal funding of research, and other priorities, that will lead to a better understanding of the commonalities among the disorders and advance the state of science for each disease.