Rare Bone Disease Research Summit – Johns Hopkins University


The Lymphangiomatosis and Gorham’s Disease Alliance (LGDA), and our research partner, the Lymphatic Malformation Institute (LMI), were among co-sponsors of the Rare Bone Disease Research Summit held recently at the Johns Hopkins University Medical Center in Baltimore. Gathered at the summit were some one hundred bone scientists, clinical researchers, oncologists, surgeons, patient support organizations, and representatives from the National Institutes of Health (NIH), including bone/musculoskeletal, dental/maxillofacial, and rare diseases.

LGDA Board Members Jack Kelly and Tiffany Ferry had an opportunity to meet with advocacy colleagues, scientists, clinicians, and representatives of the NIH to discuss collaboration of resources and development of a research agenda to leverage funding and to build a strong, unifying program and voice pressing for increased government and private research funding in rare bone diseases.

Presentation and discussion of Gorham’s disease and lymphangiomatosis were led by two distinguished clinical researchers from Boston Children’s Hospital,  Matthew Warman, MD, and Cameron Trenor III, MD.  Proceedings of the summit are expected to be published soon.