LGDA participates in 1st Rare Bone Disease Advocacy Day on Capitol Hill

The Lymphangiomatosis & Gorham’s Disease Alliance (LGDA) is a founding member of the newly created Rare Bone Disease Advocacy Alliance, a coalition of rare bone disease organizations committed to advancing research of rare bone diseases by working directly with Congress and the Executive Branch. On September 18, 2013, advocates from the LGDA and other Rare Bone Disease Advocacy Alliance (RBDAA) member organizations hosted the first-ever Rare Bone Disease Advocacy Day on Capitol Hill in Washington, DC.

On Advocacy Day, advocates from across the nation met with their elected officials in Congress to explain the real-life impact of rare bone disorders and the need to accelerate the federal government’s commitment to supporting research. Over the course of the day, participants shared their personal experiences with rare bone diseases with members of Congress and their staffs. Advocates also shared these points with members and their staffs:

  • The Rare Bone Disease Advocacy Alliance was created in early 2013 by 7 national non-profit organizations that collectively represent thousands of Americans living with rare bone diseases.
  • The mission of the Rare Bone Disease Alliance is to work with Congress and the Executive Branch to promote public policy that advocates awareness, understanding, and research of rare bone disorders.
  • Rare bone diseases represent a serious, yet largely unaddressed, public health concern.
  • An unknown, but substantial, number of Americans are afflicted by unique disorders of the bone that are painful, debilitating, and lead to additional and often life-threatening respiratory, coronary, pulmonary, circulatory, and other complications.
  • The impact of rare bone diseases on the quality of life for those affected deserves a strong response by government agencies with responsibility for supporting research, particularly the National Institutes of Health.
  • For many disorders, currently government funded research amounts to less than $2 million per year and for others there is no sponsored reach at all.
  • Over the past five years, the NIH has  dedicated just over $5 million per year to the rare bone  disease field – that amount is .0001 percent of the NIH research budget.
  • Members of Congress were encouraged to adopt legislative report language that addresses the RBDAA’s public policy goals, including the need to accelerate government-sponsored research of rare bone disorders.

For more details read Rare Bone Diseases Challenges and Solutions

Article updated October 1, 2013.