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.

Conference Flyer 2018 - Rare Bone Disease Alliance

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
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
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 January 31, 2018