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The CJDISA Friends and Advisors Group

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

Neurologist – Scientist
Director, Australian National Creutzfeldt-Jakob Disease Registry (ANCJDR)
Professor/Senior Principal Research Fellow in the Department of Medicine, the University of Melbourne
Clinical Lead, Dementia Mission and Member, Clinical Governance Committee, The Florey
Head, Mitochondrial & Autoimmune Neurological Disorders diagnostic laboratory, Department of Clinical Neurosciences and Neurological Research, St Vincent’s Hospital, Melbourne
Medical Director of the CJDSGN

Professor Simon Hawke

Prion Disease Group, University of Sydney

Jennifer Cooke

Journalist and author

Professor Andrew Hill

Professor and Deputy Vice-Chancellor Research & Impact, Victoria University, Melbourne, Australia

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


Dr. Neil Cashman

Professor of Medicine (Neurology) at the University of British Columbia
Co-founder and CSO of ProMIS Neuroscience

Dr Kevin Keough

Professor Emeritus of Biochemistry at Memorial University of Newfoundland and Principal of Kevin Keough Consulting Incorporated

Dr. Valerie Sim, MD, FRCPC

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

Gerard H. Jansen, MD FRCPC

Associate Professor of Neuropathology and Reference Neuropathologist National CJD Laboratory at the University of Ottawa
Neuropathologist at the Eastern Ontario Regional Laboratory Association


Dr. Qi Shi, MD, PhD, Professor of Virology 

Director, CJD Surveillance Center, Department of Prion Disease, Institute for Viral Disease Control and Prevention (IVDC), 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-Phillippe Brandel

Cellule Nationale de référence des maladies de Creutzfeldt-Jakob
Groupe Hospitalier Pitié-Salpêtrière


Professor Dr. Inga Zerr, MD

German National Reference Center for Transmissible Spongiform Encephalopathies (NRZ-TSE)
Department of Neurology
University Medical Center Göttingen

Dr. Peter Hermann, MD

German National Reference Center for Transmissible Spongiform Encephalopathies (NRZ-TSE)
Department of Neurology
University Medical Center 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 Fabrizio Tagliavini

Professor Gianluigi Forloni

Associate Professor Gianluigi Zanusso

Neurology and Movement Department, University of Verona, Italy


Hidehiro Mizusawa, MD, Phd

President’s advisor, President Emeritus, National Center of Neurology and Psychiatry
Specially-appointed Professor, Professor Emeritus, Tokyo Medical and Dental University

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.

Dr Andrew Chancellor BHB, MBChB, MD, FRACP, FRCP


Associate Professor Saima Zafar (PhD)

National University of Sciences and Technology, Islamabad, Pakistan


Associate Professor Adeline Ng, MBChB (Edinburgh), MCRP (United Kingdom)

Senior 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, 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 and Clinical Lead of the NHS National Prion Clinic
Professor of Neurology and Deputy Director of the MRC Prion Unit at UCL
UK CJD Support Network Committee Member

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
Director of the NHS National Prion Clinic, National Hospital for Neurology and Neurosurgery, London


Dr. Paul Brown, MD

Neurologist, neuroscientist

Professor Brian Appleby, MD

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

Dr. Lawrence B. Schonberger, MD, MPH

Distinguished consultant and epidemiologist
Assistant Director for Public Health & Chief, Prion and Public Health Office, Division of High Consequence Pathogens & Pathology, NCEZID, CDC, Atlanta, GA

Professor Michael Geschwind

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

Corinne Lasmezas, DVM, PhD

Professor, UF Scripps, Florida, USA

CEO, Vova Ida Therapeutics, Inc. (VIT)

Eric Minikel

Senior Group Leader, Broad Institute of MIT and Harvard

Sonia Vallabh

Senior Group Leader, Broad Institute of MIT and Harvard

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 Neurological Infections and Immunity, Rocky Mountain Laboratories (RML)


The CJDISA acknowledges the commitment and dedication of the following members of the F & A group who have retired or are no longer working in the field of prion disease.

Professor Robert Will  –  UK

Professor Pierluigi Gambetti –  USA

Professor Mauritizio Pocchiari  –  Italy

Dr Ermias Belay  –  USA

Rolande D’Amour, RN, MScN – CANADA


Our thoughts are with the family of Associate Professor Naomi Hachiya from Japan who passed away 5/2/23 after a short battle with cancer.  Naomi was very dedicated to her research work in the field of prion disease, she was a member of the Asian Pacific Prion Research Association and hosted this event in 2018.  Naomi continued her dedication as director of the New Step Research Centre in Japan.