LGDA Joins Rare Bone Disease Patient Network


first posted 12/18/2007

It is a distinct pleasure to announce that The Lymphangiomatosis & Gorham’s Disease Alliance has been accepted as a member of the Rare Bone Disease Patient Network (RBDPN), a coalition of rare bone disease organizations, established under the auspices of the U. S. Bone and Joint Decade (USBJD).

The USBJD is a global, multi-disciplinary initiative targeting the care of patients with musculoskeletal conditions – bone and joint disorders. The RBDPN is a coalition of bone disease organizations to advance the goals of the USBJD which are to improve the quality of life for patients with these disorders by advancing the knowledge and understanding of these diseases through education and research. The Network was formed so that rare bone disease organizations can pursue together their common objectives, such as joint bone-related projects, awareness and advocacy, knowledge-sharing, and integration into the larger bone community.

“Our membership in the RBDPN is very important to our foundation as we begin the very essential and critical task of defining the disease-attributes, and as we start the search for the causes of lymphangiomatosis/Gorham’s disease,” explained Jack Kelly, president of the LGD Alliance. “We expect to work closely with all the other members of this rare bone consortium.”