- Fibrous dysplasia of bone
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ORDR Co-Sponsored Conferences
2016 Rare Disease Day at NIH, Monday, February 29, 2016
Location: Building 10, Masur Auditorium, National Institutes of Health, Bethesda, MD
Description: The 2016 Rare Disease Day at NIH will take place on February 29. The event, sponsored by NCATS and the NIH Clinical Center, aims to raise awareness about rare diseases, the patients they affect and the research collaborations that are addressing rare disease challenges. The day will feature tours, posters and exhibits, and presentations.
Mechanistic and Therapeutic Insights into Skeletal Biology Learned from the Study of Rare Bone Diseases, Thursday, September 11, 2014
Location: Hilton Americas, Houston, TX
Description: <p>This workshop, coordinated by the National Bone Health Alliance (NBHA) in partnership with the Rare Bone Disease Patient Network and with the support of the American Society for Bone and Mineral Research (ASBMR) and the United States Bone and Joint Initiative (USBJI) aims to: 1)Convene a multi-disciplinary group of experts including researchers, clinicians, and patients with rare bone diseases to advance our understanding of skeletal biology and encourage the development of novel therapies to improve outcomes for individuals with both common and rare bone diseases;<span> </span>2)Identify gaps in our knowledge regarding the biologic mechanisms underlying rare bone disorders and share effective research strategies in translational and therapeutic areas;<span> </span>3)Encourage broad participation both by holding the event the day before the ASBMR 2014 Annual Meeting and providing funding for a significant number of young investigators to attend; and 4)Disseminate the results broadly by publishing the proceedings of the program in a peer-reviewed journal.</p>
International Meeting on Fibrous Dysplasia of Bone/McCune-Albright Syndrome: Best Clinical Practice and Future Research, Sunday, October 03, 2010 - Tuesday, October 05, 2010
Location: NIH, Natcher Conference Center, Bethesda, Maryland
Description: The clinical scientists presented the results of their investigations and experience in the care of patients with fibrous dysplasia (FD) to the entire group for discussion and comment. At the end of the conference they came together in subgroups to define what is commonly held to be the best clinical practice. The scientists likewise presented their data for discussion and comment and came together to generate a roadmap for the focus of current and future research. It was also a goal to create greater collaboration between and among the clinical and basic scientists and the patient advocacy groups. One goal of the latter interaction was to promote the creation of a patient registry and tissue bank that will allow for the collection of standardized data on an international basis and make invaluable clinical material available to basic scientists.