The Generative Brain

Support groups by country

Support organisations for CJD and other prion diseases exist in around twenty countries and are listed together by the CJD International Support Alliance. Most offer information, contact with other families, and someone to talk to by phone or email.

Talking to someone whose family has been through this is a different kind of help from anything a clinic can give. These are the organisations that exist to provide it.

United States

The CJD Foundation runs a toll-free helpline on 1-800-659-1991, available seven days a week, and answers email at help@cjdfoundation.org. Its stated mission is to support families affected by prion disease, raise awareness, and support medical education and research. It holds an annual family conference, publishes caregiving material including a caregiving guide, and runs virtual support groups. The group for people currently caring for someone is led by family members who have cared for a relative themselves, and registration goes through the helpline.

United Kingdom

The CJD Support Network describes itself as the only UK charity dedicated to all forms of CJD and prion disease. Its helpline is 0800 774 7317, open Tuesdays 08:30 to 15:30 and Wednesdays to Thursdays 11:00 to 18:00, with callbacks to messages left outside those hours, and it answers email at support@cjdsupport.co.uk. It is registered charity 1097173 in England and Wales.

Since 2023 it has run quarterly evening online support groups on four themes: sporadic CJD, inherited prion disease, iatrogenic or acquired CJD, and former carers. It holds an annual family support meeting, and makes care grants to families where health and social care cannot cover costs.

Australia

The CJD Support Group Network was established in 1994 and is a registered charity, funded in part by the Department of Health to support people at increased risk. It offers information and support to families and carers, educational resources, an education and awareness programme for health professionals, advocacy, and a private Facebook group where families can reach each other. It also advocates for families who face delays in care or discrimination when infection control guidance is misapplied.

Canada

The Canadian CJD Association is a federally incorporated not-for-profit, co-founded by two people who each lost a relative to CJD, with a medical director who researches prion disease. It connects families with specialists and with other families, and works with the Canadian CJD Surveillance Centre. The surveillance system itself was established in 1998 and also supports patients, families and health care providers through education, including a family newsletter.

India

CJD Care India started in 2017 to bring together people affected by prion disorders and those studying them, and to connect families with reliable help. It can be reached on +91 9867200230 or at cjdcareindia@gmail.com. See also CJD Care India in the Atlas.

Spain

The Fundacion Espanola de Enfermedades Prionicas offers free individual psychological support and a grief group, accompanies relatives during and after the illness, and publishes legal guidance covering economic aid, dependency support, advance directives, tissue donation, preimplantation genetic diagnosis and palliative care.

Elsewhere

The CJD International Support Alliance keeps the directory of member associations, which also includes groups in Germany, Italy, Austria, Portugal, New Zealand, Chile, Mexico, Brazil, France, Japan, Turkey and Pakistan. If your country is not listed, the alliance is still a starting point, and the national support organisations above will often help someone from outside their own country find a contact.

What else might help

Practical and financial help covers benefits and costs. Talking with children is there if younger people in the family are affected. Countries sets out how care and surveillance are organised in different places, and foundations and patient groups holds the fuller Atlas records.

The details above come from each organisation’s own pages and can change. Phone numbers and opening hours are worth checking on the organisation’s site before you rely on them.

Sources for this page