Professional Advisory Council

The Professional Advisory Council acts as a liaison between the patient advocacy triangle: industry, providers, and the patient community, where we share information and communicate openly to find the most urgent unmet needs of patients and find ways to fill those needs. The Council is available to provide assistance and meets on an as-need basis.

Deborah Barbouth, M.D, FAAP, FACMGG, Associate Professor, Division of Clinical and Translational Genetics, Dr John T. Macdonald Foundation Department of Human Genetics, University of Miami, Miller School of Medicine

Stuart Ditcheck, MD, Clinical Assistant Professor, Department of Pediatrics at NYU Grossman School of Medicine

Ozlem Goker-Alpan, MD, LDRTC, Fairfax, Virginia

Nadene Henderson, MS, LCGC, Senior Genetic Counselor, Children’s Hospital, University of Pittsburgh Medical Center

Seema Kanwal, ND, Balance Medical Center, Vancouver, BC

Reena Kartha, MS, PhD, Assistant Professor, University of Minnesota, Center for Orphan Drug Research, Dept. of Experimental and Clinical Pharmacology

Seymour Packman, MD, Professor Emeritus Division of Medical Genetics Department of Pediatrics, University of California, San Francisco

Ellen Sidransky, MD, Chief, Medical Genetics Branch, National Human Genome Research Institute, National Institutes of Health