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The Rare Bone Disease Alliance, originally organized in 2006 as a patient advocacy network, evolved into the Rare Bone Disease Alliance which includes patient organizations and thought leaders in the rare bone disease field.

The Alliance missions are: stimulating education on rare bone disease through working with professional medical and scientific societies, organizing its own meetings, and assisting patients and families affected by rare bone disease.

Patient Network Organizations

RBDA Steering Committee

Physician Scientists

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

Michael T. Collins, MD
Chief, Skeletal Clinical Studies Unit
Craniofacial and Skeletal Diseases Branch
NIDCR, NIH

Dolores Shoback, MD
Professor of Medicine, UCSF
Endocrine Research Unit
San Francisco VA Medical Center

Laura Tosi, MD
Director, Bone Health Program
Children’s National Hospital
Washington, DC

Patient Organization Representatives

Michelle Davis

Executive Director
International FOP Association

Neena Nizar, Ed.D
Founder and Executive Director
Jansen’s Foundation

Sarah Ziegler
Co-Founder, Vice President, Director of Research
The MHE Research Foundation

The Rare Bone Disease Alliance is a program of the Osteogenesis Imperfecta Foundation.
For more information, please contact Melissa Bonardi at mbonardi@oif.org.