CJD Support Group Network (Australia)
The CJD Support Group Network (CJDSGN) maintains a national support group network through which all Australians affected by Creutzfeldt-Jakob (CJD) or other prion disease, can access information, assistance and support and interact with each other for mutual support. The CJDSGN is committed to ongoing educational and awareness programs.
Director/National Coordinator – 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 knowledge by providing educations tools to health care professionals and others.
President – Debbie Yobs
CJD Support Network UK
The CJD Support Network UK provides support and information for people affected by all forms of prion disease in the UK. This includes people who are at risk, sporadic and genetic patients and family members as well as those affected by variant CJD.
National CJD 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.
Advisor – Muneto Ueda
A.I.En.P. – ONLUS (Italy)
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. Associazione Italiana Encefalopatie da Prioni Onlus.
President – Raffaella Robello
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.
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 information 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.
President – Jens Backer
Asociación CJD (Spain)
We are people united by the existence of a rare, devastating and deadly disease, which affects the brain and nervous system, known as prion disease or Transmissible spongiform encephalopathy (TSE). Some of us were relatives or friends of affected people, other researchers dedicated for years to study the disease. All without exception we thought it necessary to help other people who, like us, suffer this terrible disease, because we are very aware of how difficult it is to confront in solitude a disease of these characteristics.
This desire to help and other necessary factors that appeared as a result of chance encouraged us to organize, wishing to be a reflection of the American Foundation of CJD and other international associations. In May 2013 we created the CJD Association (Creutzfeldt-Jakob Disease), at the state level, thanks to the enthusiasm of 11 people.
ASSOCIATE MEMBER ORGANISATIONS
Creutzfeldt-Jakob Foundation Israel
The CJD Foundation Israel was formed in 2008. In Israel there is a large community of families affected by genetic CJD. The organization supports those families as well as actively supporting research into genetic CJD being conducted all over the world.
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.
President – Dr Victor Sanchez
Canadian CJD Association
Co-founded by Terri Chaston-Smith and Leith Coughlin Canadian CJD Association was established in 2015. Still in the infancy of the association fundraising continues to raise the money required to establish a legal association approved by the Canadian government.
The aim of the association is to help families in their time of need by providing them with an understanding ear and guidance to professional care, either by connecting them with the appropriate doctors, or in collaboration with the Surveillance center providing aid with difficult decisions.
As the association grows the hope is to assist families on many different levels.
Co-founder- Terri Chaston-Smith
Co-founder- Michelle Santos
Dr. José Eriton has worked with CJD in Brazil since he was an undergraduate student. Using social media, he started to support families with information about prion disease reach families in all country.In 2016 with families members dcjBRASIL was created using social media to share information, experiences and support more and more families.
Founder and Scientific Director – José Eriton Gomes da Cunha
CJD Care India
In January 2017, Suhani Chhaparwal became the most recent addition to the CJDISA as she has decided to set up a network of people in India affected by CJD or other prion diseases. Unhappy with the state of information and care in India, Suhani wants to activate a network that could help others cope with the rapid downfall, typical of prion diseases, and also alleviate the prevalent social taboo on professional grief counselling. CJD Care India will work with the CJDISA to bring together affected Indians and doctors to spread the word on the cause. Dr. Annu Aggarwal will be the medical director for the support group and together, they aim to provide emotional and medical assistance to patients and families.
www.cjdcareindia.org (under construction) firstname.lastname@example.org
Founder/Family Member – Suhani Chhaparwal
CJD Support New Zealand
Toni lost her husband in 2019 to sporadic CJD and has joined Lisa Hurry and Suzanne Solvyns in establishing an official association to offer support to CJD families in New Zealand as well as those at increased risk of developing CJD. Dr Nicholas Cutfield and Dr Andrew Chancellor has both accepted roles as Medical Directors of the network.
Co-ordinator – Toni Sullivan