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Rare Bone Disease Alliance Scientific Symposium

Emerging Research and Clinical Applications in Rare Bone Diseases

June 23, 2021, from 12 pm-3 pm, Eastern Daylight Time (GMT -4:00)

Developing therapies for rare bone diseases presents unique challenges requiring multiple steps, from identifying cellular pathways and targets to conducting clinical trials in diverse and challenging patient populations. This symposium will highlight two rare bone diseases, Jansen’s Disease and Achondroplasia, that are at different stages along this trajectory toward the development of gold standard clinical treatments.

This meeting is co-chaired by Dr. Alison Boyce of the National Institutes of Health and Dr. Eileen Shore of the University of Pennsylvania. Researchers, clinicians, and young investigators interested in rare bone diseases are encouraged to attend. To register for the symposium, go to https://us02web.zoom.us/meeting/register/tZUqcO-opz0iGdBYQdtLZIhDuoCPB_jrZm6C or click the register now button below.

For questions, please contact bonelink@oif.org.


12:00 pm EDT  
Welcome Remarks
Meeting Co-Chairs, Dr. Alison Boyce and Dr. Eileen Shore

12:10-12:50pm EDT  
How to turn off a mutant PTHR1: lessons from Jansen’s disease
Harald Jueppner, MD,  Chief of Pediatric Nephrology, Massachusetts General Hospital 

1:00pm-1:40pm EDT 
New developments in achondroplasia – from natural history to targeted therapies
Michael Bober, MD, PhD, Director, Skeletal Dysplasia Program, Alfred I. duPont Hospital for Children
Julie Hoover-Fong, MD, PhD, Director, Greenberg Center for Skeletal Dysplasias

2:00pm-3pm EDT 
Small-Group Discussions

3:00pm EDT 


June 23
12:00 pm - 3:00 pm