Rare Bone Disease Patient Organizations Joining Together to Expand Bone-Related Awareness, Research and Advocacy
MISSION
The Rare Bone Disease Patient Network is a coalition of rare bone disease organizations, established under the auspices of the U.S. Bone and Joint Decade,with the mission to share information, expertise and resources, in a collaborative effort to increase awareness, understanding, and research of rare bone disorders.
OBJECTIVES
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Mentoring and Knowledge-Sharing
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Networking Opportunities
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Joint Bone-Related Projects
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Joint Awareness and Advocacy Activities
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Integration of Rare Bone Disease Groups Into Bone Community
PROGRAMS
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1st Advances in Rare Bone Diseases Scientific Meeting
October 22-24, 2008, Bethesda, Maryland
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Participation in Scientific Meetings to Exchange Knowledge and to Promote Rare Bone Diseases (Orthopaedic Research Society, American Society for Bone and Mineral Research)
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Website to Provide Resources for Rare Bone Disease Organizations
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Meetings to Exchange Knowledge, Provide Mentoring, and to Determine Priorities for Expanding Awareness, Research, and Advocacy
MEMBERS
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Fibrous Dysplasia Foundation
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International Fibrodysplasia Ossificans Progressiva Association
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International Osteopetrosis Association
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Lymphangiomatosis & Gorham's Disease Alliance (LGD Alliance)
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Melorheostosis Association
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MHE Research Foundation
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Osteogenesis Imperfecta Foundation
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Paget Foundation For Paget's Disease of Bone and Related Disorders
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XLH Network
For more information on membership or the work of the Network, contact either of the Network Co-Chairs:
Network Co-Chairs
Joanne Joseph
Vice President
The XLH Network, Inc.
Ph: 301-910-1864
joannejoseph@comcast.net
Jack Kelly
President
Lymphangiomatosis & Gorham's Disease Alliance
Ph: 561-441-9766
jayfk20@bellsouth.net
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