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
Carlos Ferreira, MD
Staff Clinician, Skeletal Genomics Unit
Metabolic Medicine Branch
NHGRI, 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
Adrienne McBride
Executive Director
FD/MAS Alliance
Neena Nizar, Ed.D
Founder and Executive Director
Jansen’s 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.