Patient Meeting: Joining Together to Expand Bone-Related Awareness, Research and Advocacy
On April 6, 2006, representatives of rare bone disease patient organizations met in Washington, DC, to discuss common issues they face, opportunities for collaboration, and to bring them into the "bone community." The meeting had three main purposes: 1) to introduce the rare bone disease organizations to organizations within the larger bone community; 2) to provide an opportunity for the rare bone disease groups to meet and to network; 3) to discuss potential bone-related projects relating to rare bone diseases during the Bone and Joint Decade. The National Osteoporosis Foundation kindly provided their offices for the meeting which was organized by USBJD Board member Hillary Weldon, and Charlene Waldman of The Paget Foundation for Paget's Disease of Bone and Related Disorders. Excitement and enthusiasm was evident in the discussions that took place, as well as for the process to continue. Several specific outcomes were discussed.
During the first part of the meeting Joan McGowan, PhD, Chief, Musculoskeletal Disease Branch, National Institute of Arthritis and Musculoskeletal and Skin Diseases and Stephen Groft, DPharma, Director, NIH Office of Rare Diseases, discussed the NIH resources opportunities for collaboration from NIH. T. King, USBJD Executive Director, provided a presentation on the Decade and. Ann Elderkin, Executive Director, American Society for Bone and Mineral Research outlined some activities of the society and invited the groups to share a table to disseminate information at the annual meeting, and said the society could look at ways to list websites and include activity information in ASBMR publications.
Large bone organizations were represented by Christy Gilmour and Bob Jasak, American Academy of Orthopaedic Surgeons, and Judith Cranford and Roberta Biegel, National Osteoporosis Foundation who made presentations on their organizations, awareness, advocacy and research activities.
Heller An Shapiro, Osteogenesis Imperfecta Foundation, and Charlene Waldman outlined some of the activities of their organizations and the rest of the day was taken with a round table discussion including Alice Albin and Kathleen Harper, Melorheostosis Association, Amanda Cali, International FOP Association, Andrea Harles, The Fibrous Dysplasia Foundation, Joanne Joseph, XLH Network. Richard Clark and Betsey Lordan, NIAMS/NIH Office of Communications and Public Liaison, and Wilma Peterman, MS, Senior Program Analyst, NIAMS/NIH were also present during the day.
The meeting concluded agreeing that a proposal should be made to the U.S. Bone and Joint Decade for creation of a new coalition of rare bone diseases organization under the Decade. The mission of the coalition will be similar to the goals of the meeting. Specific activities discussed include organization of a Scientific Meeting on Rare Bone Diseases, and development of a resource book on rare bone disorders for physicians and other healthcare professionals. An important purpose of the coalition will be to provide mentoring and enable knowledge-sharing among the organizations on best practices, as well as to promote research. Some joint awareness and advocacy activities might be held, for example the sharing of booth space at larger bone organization meetings to disseminate information.
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