McCune Albright syndrome
- Albright syndrome
- Albright's disease
News & Events
On this page
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.
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.