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Rare Bone Disease Patient Organizations Joining Together to Expand Bone-Related Awareness, Research and Advocacy





The Rare Bone Disease Patient Network is a coalition of rare bone disease organizations, established to share information, expertise and resources, in a collaborative effort to increase awareness, understanding, and research of rare bone disorders.




  • Mentoring and Knowledge-Sharing 
  • Networking Opportunities
  • Joint Bone-Related Projects
  • Joint Awareness and Advocacy Activities
  • Integration of Rare Bone Disease Groups Into Bone Community


  • 1st Advances in Rare Bone Diseases Scientific Meeting
    October 22-24, 2008, Bethesda, Maryland
  • Participation in Scientific Meetings to Exchange Knowledge and to Promote Rare Bone Diseases (Orthopaedic Research Society, American Society for Bone and Mineral Research) 
  • Website to Provide Resources for Rare Bone Disease Organizations
  • Meetings to Exchange Knowledge, Provide Mentoring, and to Determine Priorities for Expanding Awareness, Research, and Advocacy


  • Fibrous Dysplasia Foundation
  • International Fibrodysplasia Ossificans Progressiva Association
  • International Osteopetrosis Association
  • Lymphangiomatosis & Gorham's Disease Alliance (LGD Alliance)
  • Melorheostosis Association
  • MHE Research Foundation
  • Osteogenesis Imperfecta Foundation
  • Paget Foundation For Paget's Disease of Bone and Related Disorders
  • XLH Network



About Rare Bone Diseases

For Healthcare Professionals and Researchers

In the News




Soft Bones Hypophosphatasia Research Grant - Application Deadline August 15, 2012

2012 Rare Bone Disease Research Summit

Rare Disease Day

1st Advances in Rare Bone Diseases Scientific Conference

1st Advances Conference Report


Inaugural Meeting Report


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