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Expanding Our Knowledge and Developing Strategies to
Accelerate Research of Rare Bone Diseases

September 19, 2012
Turner Auditorium (Johns Hopkins Hospital Campus) · Baltimore, MD

Presented by the Rare Bone Disease Patient Network
Fibrous Dysplasia Foundation · International Fibrodysplasia Ossificans Progressiva Association · International Osteopetrosis Association · Lymphangiomatosis & Gorham's Disease Alliance (LGDA) · Melorheostosis Association · MHE Research Foundation · Osteogenesis Imperfecta Foundation · Paget Foundation For Paget's Disease of Bone and Related Disorders · Soft Bones, Inc ·
XLH Network

Meeting Chairs
Dr. Jay Shapiro

Director of the Bone and Osteogenesis Imperfecta Clinic, Kennedy Krieger Institute

Dr. Emily Germain-Lee
Director of Bone Research Program, Kennedy Krieger Institute

The Rare Bone Disease Research Summit Planning Committee is pleased to announce the following confirmed speakers:

Welcoming Remarks:
Joan McGowan, PhD, NIAMS and Steve Groft, PharmD, NIH Office of Rare Disease

Michael Collins, MD, NIDCR/NIH –– Fibrous Dysplasia

Michael Econs, MD, Indiana University –– XLH

Emily Germain-Lee, MD, Kennedy Krieger Institute –– Albright Hereditary Osteodystrophy

Maurizio Pacifici, PhD, University of Pennsylvania –– Multiple Exostoses

Jay Shapiro, MD, Kennedy Krieger Institute –– Osteogenesis Imperfecta

Eileen Shore, PhD, University of Pennsylvania –– Fibrodysplasia Ossificans Progressiva

Matthew Warman, MD, Children’s Hospital Boston –Gorham’s Disease

Michael Whyte, MD, Washington University and Shriners Hospital, St. Louis –– Hypophosphatasia and Melorheostosis


Registration for this event is $25 per person. For questions about registration, contact Jenny Stup at jstup@oif.org or

For more information about the event, please contact the organizers Tracy Hart, OI Foundation at 301-947-0083 or Charlene Waldman, at 917-797-4946.  


This event is supported by unrestricted grants from:

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