Home

The Rare Bone Disease Alliance is a new organization which will work to educate physicians, expand research on rare bone disease and assist rare bone disease patients, patient organizations, and family members.
​The Alliance will encourage professional, medical, and scientific societies to expand their educational programs on rare bone disease and will organize its own meetings and workshops.
​The Alliance is built on the progress and success of The Rare Bone Disease Patient Network (RBDPN), a coalition of patient organizations which was founded in 2006.
​Alliance participants include rare bone disease physician and scientific leaders, patient organizations, and pharmaceutical companies working in the rare bone field.

Scientific Advisory Panel

Thomas Carpenter, MD
Yale School of Medicine
 
Michael Collins, MD
National Institute of Dental and Craniofacial Research
 
Matthew Drake, MD, PhD
Mayo Clinic
 
Aris Economides, PhD
Regeneron Pharmaceuticals
 
Michael Econs, MD
Indiana University
 
Francis Glorieux, OC, MD, PhD
Shriners Hospitals for Children, Montreal
 
Suzanne Jan De Beur, MD
Johns Hopkins University School of Medicine
 
Frederick Kaplan, MD
University of Pennsylvania
 
Deborah Krakow, MD
UCLA
 
Craig Langman, MD
Northwestern University
 
Brendan Lee, MD, PhD
Baylor College of Medicine
 
Emily L. Germain Lee, MD
University of Connecticut School of Medicine
Connecticut Children's Medical Center
 
Michael A. Levine, MD
University of Pennsylvania

Karen Lyons, PhD
University of California, Los Angeles
 
Joan C. Marini, MD, PhD
NICHD
 
José Luis Millán, PhD
Sanford Burnham Prebys Medical Discovery Institute
 
Maurizio Pacifici, PhD
Children’s Hospital of Philadelphia
 
Frank Rauch, MD
Shriners Hospitals for Children, Montreal
 
Eric Rush, MD
University of Kansas Medical Center
 
Jay Shapiro, MD
Uniformed Services University of the Health Sciences
 
Dolores Shoback, MD
University of California, San Francisco
 
Eileen Shore, PhD
University of Pennsylvania
 
Jill Simmons, MD
Vanderbilt University
 
Laura Tosi, MD
Children’s National Health System
 
Matthew Warman, MD
Boston Children’s Hospital
 
Michael Whyte, MD
Shriners Hospitals for Children
 
 
 

Charlene Waldman
Alliance Director

(917) 797-4946
click here to send an email

 

The Rare Bone Disease Alliance is a program of the Osteogenesis Imperfecta Foundation

804 West Diamond Ave, Ste. 210
Gaithersburg, MD 20878
(844) 889-7579 - www.OIF.org

The Rare Bone Disease Alliance acknowledges the unrestricted support of:

as of August 31, 2017