CJD Support Network Logo

CJD International Support AlliancE

CJDISA Business Plan

Download CJDISA Business Plan here.


SMH article on Alliance - download Word DOC here


CJD Foundation Family Conference

Washington DC 2011



CJD Foundation Conference Presentations - 2011

Washington DC 2010




Washington DC 2009


Washington DC 2008

Washington DC 2007

Inaugural Meeting Washington DC 2006


The CJDISA Friends and Advisors

Group (F/A 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.


Professor Pierluigi Gambetti -

Neuropathologist, Director National Prion Disease

Pathology Surveillance Center

Medical Director of the CJD Foundation USA

Paul Brown MD-

Neurologist, neuroscientist

Brian Appleby MD -

Psychiatrist, Co-Director Frontal Temporal and

Young Onset Dementia Clinic, Johns Hopkins

Hospital, Baltimore USA

Lawrence Schonberger MD -

Neurologist, Assistanct Director for Public Health,

Centers for Disease Control and Prevention USA

Ermias Belay MD -

Epidemiologist, Assistant Director for Public Health

Centers for Disease Control and Prevention USA


Professor Neil Cashman -

Neurologist Scientific Director PrioNet Canada


Professor Robert Will -

Neurologist, Former Director and Founder,

National CJD Surveillance Unit, Edinburgh UK

Professor Richard Knight -

Director National CJD Surveillance Unit, Edinburgh

UK, Member of the CJD Support Network Committee UK

Margaret Leitch RN -

National CJD Care Co-ordinator UK

Dr Simon Mead -

Consultant Neurologist, National Prion Unit London UK


Professor Steven Collins -

Neurologist, Director Australian NationalCJD Registry

Principal Research Fellow

Medical Director of the CJD Support Group Network

Professor Simon Hawke -

Neurologist, Prion Disease Group, University of Sydney

Jennifer Cooke -

Journalist and Author "Cannibals Cows and the

CJD Catastrophe'


Professor Maurizio Pocchiari -

Research Director and Head, Clinical, Diagnosis

and Therapy of Neurodegenetative Disorders Unit

Instituto Superiore di Sanita

Professor Fabrizio Tagliavini -

Director, Divisions of Neuropathology and Neurology,

Fondazione IRCCS Istituto Neurologico Carlo Besta

Professor Gianluigi Forloni -

Head, Neuroscience Department and Laboratory

of Biology of Neurodegenerative Disorders

President Italian Association of Brain Aging Research


Jean Brugere-Picoux MD-

Valie de Broglie MD -

Director, Alliance BioSecure, France

Jean-Phillippe Brandel MD-

Researcher and Neurologist, National Network

for Disease Surveillance of CJD and related diseases

Groupe Hospitalier Iitie-Salpetriere

Benjamin Scherr -

NeuroPrion, Paris France


Professor Inga Zerr -

Department of Neurologie, National Reference Center

for TSE Georg-August University, GTottingen, Germany


Victor Sanchez MD PhD -


Professor Ruth Gabizon

Department of Neurology, Hadassah University
























NeuroPrion 2011- Montreal presentation click here


CJD Support Group Network (Australia)

The CJD Support Group Network (CJDSGN) is contracted to and funded by the Department of Health and Ageing to support and provide information to all Australians affected by CJD and other prion diseases. This includes recipients of human pituitary hormones, people in other risk groups and families caring for a loved one with suspected CJD or coming to terms with the loss of a family member or friend. The CJDSGN also promotes awareness and knowledge through an education program and resources for health care professionals. www.cjdsupport.org.au

Director - Suzanne Solvyns

(Co-Chair of the CJDISA)

CJD Foundation (USA)

The CJD Foundation (USA) consists of members concerned about the complexity of issues surrounding the fatal brain disease, CJD. Their mission is to support family and loved ones touched by CJD. The CJDF also promotes awareness and knoweldge by providing educations tools to health care professionals and others. www.cjdfoundation.org

President - Florence Kranitz

(Co-Chair of the CJDISA)

CJD Insight (USA)

The CJD Insight provide support and counselling to families affected by all forms of genetic CJD and other prion diseases. www.cjdinsight.org

Founder and Director - Deana Simpson

CJD Support Group UK

The CJD Support Group UK provides support and information for people affected by all forms of prion disease in the UK. This includes people who are at risk, spordic and genetic patients and family members as well as those affected by variant CJD. .www.cjdsupport.net

National Coordinator - Gillian Turner

CJD Support Network Japan

The CJD Support Network in Japan supports and offers assistance to people affected by prion disease in particular those suffering from CJD caused by dura mater grafts. For more information on the Japanese CJD Support Network visit their website. www.cjd-net.jp

Chair - Muneto Ueda


Established in 2008 this organisation by set up by family members to provide much needed support for families affected by sporadic, genetic or variant CJD and other prion diseases.

Associaz. Italiana Encefalopatie da Prioni www.aienp.it

President - Roberto Borgis

MCJ-HCC (France)

The MCJ-HCC (Maladie de Creutzfeldt-Jacob par Hormones de Croissance Contaminees) was formed in 1996 to support and help recipients of human pituitary hormones in France. There have been 120 victims and there are still more than 800 'survivors' living with the threat of developing CJD as a result of the French human growth hormone program. In 2011 the MCJ-HCC committed to assisting French families affected by all forms of CJD and other prion diseases www.mcj-hcc.fr

President - JB Mathieu


CJK Initiative e.V. (Germany)


The CJK Initiative e.V. was officially established in 2012 and at the Prion Conference in May 2012, held in Amsterdam, became a member of the CJD International Support Alliance. Professor Inga Zerr has been holding family meeting over the past few years to assist families with informtion and to encourage the establishment of a family organisation that can offer support and assistance to Germany families affected by CJD and other prion diseases. The new organisation was established by 10 founding members and can be contacted by visiting the website www.cjk-initiative.de

President - Jens Backer



CJD Foundation (Israel)

The CJD Foundation, Israel was formed in 2009. This organisation supports families affected by familial CJD as well as actively supporting research into familial CJD being conducted in Israel. info@cjd-israel.org

Founder and President - Alice Anane



Fundación CJD México

Página de apoyo para los familiares y seres queridos de personas afectadas con el CJD (Enfermedad de Creutzfeldt-Jakob) y demás prionopatías.


En esta página encontrarás información sobre al enfermedad, formas de afrontar la enfermedad, folletos y enlaces con demás organizaciones internacionales de apoyo para el CJD.


Estamos disponibles para ofrecer información sobre la enfermedad www.fundacioncjd.com

Director - Dr Victor Sanchez

NeuroPrion Website

CJDISA Section with presentations




NeuroPrion Conference Presentations

Prion 2013 - Banff, Canada - CJDISA Presentation

NeuroPrion 2011 - Monreal, Canada - CJDISA Presentation or to view on Youtube click here

NeuroPrion 2010 - Salzburg Austria - CJDISA Presentation

NeuroPrion 2009 - Thessaloniki - Chalkidiki, Greece - CJDISA Presentation

Neuroprion Conference 2008 - Madrid, Spain.

Neuroprion Conference 2007 - Edinburgh, Scotland

CJD Foundation USA Conference Presentations

9th CJD Foundation Family Conference - 2011 Washington DC USA

9th CJD Foundation Family Conference - CJDISA Presentation

8th CJD Family Conference 2010 - Washington DC USA

7th CJD Family Conference 2009, Washington DC USA

CJD Support Group Network (Australia) Presentation 7th CJD Family Conference 2009,Washington DC USA

6th CJD Family Conference 2008 Washington DC USA

CJD Support Group Network (Australia) Presentation 6th CJD Family Conference 2008, Washington DC USA

Press Releases



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