In 2009 the ‘Friends and Advisors’ Group was formed. This consists of scientists, researchers, neurologists and others who professionally have contributed to, and assisted the work of the CJDISA.  This group of experts and professional are committed to assist the CJDISA with information and support for CJD patients, their families and those at increased risk of CJD.



Professor Steven Collins

Director ANCJDR, Neurologist, Research Fellow, Medical Director of the CJDSGN.

Professor Simon Hawke

Prion Disease Group, University of Sydney

Jennifer Cooke

Journalist and author

Professor Andrew Hill

Head, Department of Biochemistry and Genetics, Director, RFA Understanding Disease



Professor Patrick Cras

Professor of Neurology- Department Chair of Neurology Afdeling Neurologie, Antwerp University Hospital



Professor Neil Cashman

University of British Columbia

Dr Kevin Keough

Executive Director, Alberta Prion Research Institute

Valerie Sim, MD, FRCPC

Neurologist and Assistant Professor, Division of Neurology, University of Alberta
Clinician scientist, Centre for Prions and Protein Folding Diseases, University of Alberta

Rolande D’Amour, RN, MScN

Rolande D’Amour is a senior nurse consultant at the CJD Surveillance System (CJDSS) in Canada.

Gerard H. Jansen, MD FRCPC

Associate Professor of Neuropathology and Reference Neuropathologist National CJD Laboratory at the University of Ottawa
Medical Consultant to the Canadian CJD Surveillance System
Neuropathologist at the Eastern Ontario Regional Laboratory Association



Dr. Qi Shi


Czech Republic

Radoslav Matej, MD, PhD.

Professor of Pathology and Chair, Third Faculty of Medicine, Charles University
Department of Pathology and Molecular Medicine , National Reference Laboratory for Diaognosis of Human TSE/CJD

Robert Rusina MUDr PhD

Head of Neurology, CJD Reference Centre



Dr. Jean  Brugere-Picoux

Dr. Jean-Phillippe Brandel



Inga Zerr, MD

Dr. med. Peter Hermann

Department of Neurology, Clinical Dementia Center (KDZ)
National Reference Center for Transmissible Spongiform Encephalopathies (NRZ-TSE)
University Medicine Göttingen



Dr Annu Aggarwal, MD, DNB (Neurology), MRCP (UK)

Alzheimer and Memory Clinic, Kokilaben Dhirubhai Ambani Hospital and Medical Research Institute



Ruth Gabizon, PhD

Department of Neurology, Hadassah University Hospital



Professor Maurizio Pocchiari

Research Director, Instituto Superiore di Sanita, Rome, Italy

Professor Fabrizio Tagliavini

Professor Gianluigi Forloni

Associate Professor Gianluigi Zanusso

Neurology and Movement Department, University of Verona, Italy



Hidehiro Mizusawa, MD, Ph

Chair, Prion Disease Surveillance Committee (Japan)
President, National Center of Neurology and Psychiatry

Professor Naomi Hachiya

Department of Neurophysiology, Tokyo Medical University, Tokyo

Professor Katsumi Doh-ura

Tohoku University School of Medicine



Victor Sanchez, MD


Singapore and Malaysia

Dr Adeline Su Lyn Ng, MBChB (Edinburgh), MCRP (United Kingdom)

Consultant- National Neuroscience Institute



Dr Girma Belay

Chair, CJD Reference Centre



Professor Joaquin Castilla

Ikerbasque Research Professor, CIC bioGUNE – Proteomics unit (Prion lab). Parque tecnológico de Bizkaia. Derio 48160 (Bizkaia), Spain

Jesús R. Requena, Ph.D.

CIMUS Biomedical Research Institute, University of Santiago de Compostela-IDIS



Professor Richard Knight FRCP(E)

National CJD Surveillance Unit, Edinburgh
Chair of the CJD Support Network Committee

Margaret Leitch

National Care Co-ordinator UK

Professor Simon Mead

Consultant Neurologist, National Prion Unit, London

Professor John Collinge

Professor of Neurology and Head of the Department of Neurodegenerative Disease, UCL Institute of Neurology
Director of the UK Medical Research Council’s Prion Unit
Lead of the National Prion Clinic, National Hospital for Neurology and Neurosurgery, London



Professor Pierluigi Gambetti

Neuropathologist, researcher

Dr. Paul Brown, MD

Neurologist, neuroscientist

Associate Professor Brian Appleby, MD

Co-Director, National Prion Disease Pathology Surveillance Center
Associate Professor, Departments of Neurology, Psychiatry, & Pathology Case Western Reserve University School of Medicine

Dr. Lawrence Schonberger, MD

Neurologist, Assistant Director for Public Health, Centers for Disease Control and Prevention, Atlanta, Georgia

Dr. Ermias Belay, MD

Epidemiologist, Assistant Director for Public Health Centers for Disease Control and Prevention, Atlanta, Georgia

Professor Michael Geschwind

Professor of Neurology at the Memory and Aging Center (MAC), UCSF, San Francisco

Corinne Lasmezas, PhD

Professor, Department of Immunology and Microbial Science, Florida Campus

Eric Minikel

Aspiring prion scientist at Harvard University

Sonia Vallabh

Director at Prion Alliance

Dr Glenn Telling

Director, Professor at Prion Research Center, Colorado State University