The Rare Bone Disease Alliance, originally created in 2006 as a patient advocacy network and called the Rare Bone Disease Network, has grown into a strong coalition focused on educating medical professionals, expanding research, and assisting patients and communities affected by rare bone diseases.
The Alliance encourages professional, medical and scientific societies to expand their educational programs on rare bone disease and organizes its own meetings and workshops.
Alliance participants include rare bone disease physician and scientific thought leaders, the Rare Bone Disease Patient (RBDPN) organizations and pharmaceutical companies working in the rare bone field.
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Physician Scientists
Laura Tosi, MD
Director, Bone Health Program
Children’s National Hospital
Washington, DC
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Chief, Skeletal Clinical Studies Unit
Craniofacial and Skeletal Diseases Branch
NIDCR, NIH
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Professor of Medicine, UCSF
Endocrine Research Unit
San Francisco VA Medical Center
Eric T. Rush, MD, FAAP, FACMG, CCD
Clinical Geneticist, Children's Mercy Kansas City
Associate Professor of Pediatrics, University of Missouri - Kansas City
Clinical Associate Professor of Medicine, University of Kansas
Patient Organization Representatives
Michelle Davis
Executive Director
International FOP Association
Neena Nizar, Ed.D
Founder and Executive Director
Jansen’s Foundation
Tracy Hart
Chief Executive Officer
Osteogenesis Imperfecta Foundation
Sarah Ziegler
Co-Founder, Vice President, Director of Research
The MHE Research Foundation
Alliance Director, Charlene Waldman
waldmancharlene234@gmail.com
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