
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
800-981-2663.
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:
