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

Dr Debra Scott

Palliative Care and Patient Care advisor to the CJD Support Group Network


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 Sh

National Institute for Viral Disease Control and Prevention, China CDC


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


Sokratis G. Papageorgiou

Assoc. Prof of Neurology and Neuropsychology
Medical School, National and Kapodistrian University of Athens
1st University Department of Neurology
“AEGINITEIO” University Hospital


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


Evelien Lemstra MD, PhD

Neurologist, Alzheimer Center Amsterdam and Department of Neurology, Amsterdam University Medical Centers.
Member of the National CJD Working group in the Netherlands.
President of the Working group for cognitive neurology within the Dutch Neurology Association.


Dr Nick Cutfield

Clinical Senior Lecturer in the Department of Medicine at the University of Otago, and
Consultant Neurologist and Clinical Lead at Dunedin.
Director, National CJD Registry, New Zealand.


Victor Sanchez, MD


Associate Professor Saima Zafar (PhD)

National University of Sciences and Technology, Islamabad, Pakistan


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 Shun-Sheng Chen

Emeritus Voice-Superintendent & Professor of Neurology
Kaohsiung Medical Center, Chang Gung Memorial Hospital
Kaohsiung Taiwan

Professor Ming-Jang Chiu

Director, Department of Neurology, NTU Hospital Taiwan


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

Byron Caughey, PhD

Senior Investigator and Chief of the TSE/Prion Biochemistry Section of the Laboratory of Persistent Viral Diseases, Rocky Mountain Laboratories (RML)