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.

www.cjdsupport.org.au

contactus@cjdsupport.org.au

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.

www.cjdfoundation.org

help@cjdfoundation.org

President – Debbie Yobs

CJD Insight (USA)

The CJD Insight provides support and counselling to families affected by all forms of genetic CJD and other prion diseases.

cjdinsight@gmail.com

Founder and Director – Deana Simpson RN    (Co-Chair of the CJDISA)

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.

www.cjdsupport.net

admin@cjdsupport.net

National Coordinator – Beth Marsh

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

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.

www.aienp.it

aienp.presidenza@gmail.com

President – Raffaella Robello

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.

www.cjk-initiative.de

info@cjk-initiative.de

President – Jens Baker

Fundación de Enfermedades Neurodegenerativas (Chile)

Foundation for Neurodegenerative Diseases (FEN) was established in 2014 to provide support to families affected and who struggle in order to overcome prion diseases.

www.fundacionfen.org

CEO – Gonzalo Sièyes Contreras

Fundación Española de Enfermedades priónicas

www.fundacionprionicas.org

Foundation of Neurodegenerative Diseases Mexico AC (FENDMEX)

Dr. Victor Sánchez has worked with CJD in Mexico for the last 12 years, where he has lead the effort to establish a CJD Surveillance Center. Dr Sánchez established the Fundación CJD México as a patient association in the year 2010 and has, since that time, provided support to CJD patients and their families in Mexico and Latin America. He is now the Medical Director of the Fundación de Enfermedades Neurodegenerativas México (Mexican Foundation of Neurodegenerative Diseases, FENDMEX)

FENDMEX was established in 2021 as a non-profit organization by the current President, Mr. Francisco Mota, who is a CJD family member. FENDMEX provides support and assistance for families dealing with neurodegeneration (mainly Prions and Alzheimer) diseases. FENDMEX goals and aims are to become an important fundraising association for research on neurodegenerative diseases, promote education for Healthcare practitioners, support patients and their caregivers and raise awareness of these diseases.

As Victor Sanchez was not a family member when he established Fundación CJD México he became an associate member of the CJDISA . FENDMEX, however, fulfils all of the criteria for full membership status. FENDMEX officially became a member organisation of the CJDISA in 2022.

www.fendmex.org

Creutzfeldt-Jakob Foundation Israel

The Foundation was founded at 2008 by Alice Anane, whose father died at the age of 49 years from what was discovered to be genetic prion disease. Alice and her siblings are all carriers of the mutation that causes the disease. The foundation became her mission in life!

In Israel there is a relatively high prevalence of the genetic form, estimated about 1:200:000. The foundation supports families and consolidates them as a community (about 400 genetic families till 2021), with a motivation to contribute to research of prion disease.

The foundation also connects with many researchers around the world and initiates and supports research for advancing the understanding and the treatment for CJD.

www.cjd-israel.org                        

Canadian CJD Association

Co-founded by Terri Chaston and Michelle Santos the Canadian CJD Association achieved its charitable status in 2021. Terri and Michelle work closely with Dr. Valerie Sims, who is the Medical Advisor of the Canadian CJD Association. They also collaborate with the CJD Surveillance Center in Ottawa Ontario to aid families in Canada.

This organization was created by family members who both had lost family to CJD –Terri lost her brother Mike to sporadic CJD (sCJD) in June of 2011 and Michelle lost her mother to sporadic CJD (sCJD) in 2014. Realizing the need for a Canadian organization the Canadian CJD Association was born to fill that void.

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.

www.canadiancjdassociation.com

info@canadiancjdassociation.com

ASSOCIATE MEMBER ORGANISATIONS

dcjBrasil (Brazil)

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.

www.dcjbrasil.org        

contato@dcjbrasil.org

Founder and Scientific Director – José Eriton Gomes da Cunha

CJD Care India

CJD Care India was started in 2017 with the objective to bring together those affected by or studying prion disorders with each other.
It is an effort to unify persons that can provide reliable assistance, support, and care in a time of need. It also aims to establish an ongoing dialogue with doctors and researchers on how can we better position ourselves to one day, find a cure.
We believe that information about the disease and its prognosis is instrumental in living through the period of caring for your loved one, and thus, intend to share the latest updates on the diseases and prion-related research.

www.cjdcareindia.org     

CJD Support New Zealand

Katie Phillipps lost her mum in 2007 to sporadic CJD, together with Rachelle Collier who lost her mum in 2021, and Toni Sullivan who lost her husband in 2019, they have joined 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 have both accepted roles as Medical Directors of the network.

www.cjdsupport.org.nz       

contactus@cjdsupport.org.nz

Director – Katie Phillips

Pakistan CJD Foundation   

The idea of Pakistan CJD Foundation was conceived in Spain. Dr. Saima and I went to attend the Prion conference in Santiago de Compostela where we understood the importance of the work CJDISA were doing and realized that the people of Pakistan had no such support system. We decided there and then that we would do this for our people when we moved back home. I returned last year and got in touch with Mr Khattak Qaisar whose father had CJD. His struggle in getting a diagnosis and finding support confirmed our conviction that there should be a CJD Foundation in Pakistan. Together we want to increase the awareness about CJD and be there to provide medical and psychological help to the people in need.

pakistancjdfoundation.org

Founder – Dr Aneeqa Noor

COUNTRY CONTACTS

Austria

Edwald Lindner – ewald.lindner@medunigraz.at