Scientific Oversight Committee

HDYO’s JOIN-HD Global Registry is an innovative registry aiming to locate and understand the experiences of patients and caregivers impacted by Juvenile-HD. To tackle this endeavor, we need an equally innovative Scientific Oversight Committee comprising of world-renowned experts. Meet our SOC!

Dr. Martha Nance

Medical Director, Struthers Parkinson’s Center, Clinical Professor of Neurology at University of Minnesota and Director of HD Center of Excellence at Hennepin County Medical Center

Dr. Jean-Marc Burgunder

Professor of Neurology, Senior Consultant in Neurogenetics University of Bern, Head Swiss Huntington Center, Gümligen, Bern

Dr. Leon Dure

Professor & Director of the Division of Pediatric Neurology at the University of Alabama at Birmingham, USA

Helen Santini

Specialist JoHD Adviser for the HDA of England and Wales

Dr Ferdinando Squitieri

Head of Neurology and Head of Huntington and Rare Diseases Unit, The Mendel Institute of Human Genetics and Scientific Officer and Co-Founder, Lega Italiana Ricerca Huntington, Rome, Italy

Dr Peggy Nopoulos

Professor of Psychiatry, Pediatrics and Neurology and Chair and DEO, Department of Psychiatry, University of IOWA, USA

Dr Benjamin Wilfond

Director of the Treuman Katz Center for Pediatric Bioethics at Seattle Children's Hospital and Professor and Chief of the Division of Bioethics in the Department of Pediatrics at the University of Washington School of Medicine

Dr Rebecca Mason

Clinical Trials Manager, ICON

Contact US

These goals cannot be done by just a few people by themselves. The JHD community needs as many partners working together as possible to reach families, encourage participation, help us develop resources and much more.