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CJD International Support Alliance (CJDISA) logo

CJD International Support Alliance (CJDISA)

CJDISA is an international coalition of national, grassroots nonprofit support groups for people affected by or at risk of prion disease, their families and carers. Its directory lists 15 full member associations in 13 countries, among them the CJD Foundation (USA), the CJD Support Network (UK), the Australian CJD Support Group Network, the Spanish prion disease foundation and CJD Care India, plus five associate members in Brazil, Pakistan, France, Japan and Turkey. It runs the international campaign for CJD Awareness Day on 12 November, posts plain-language research and trial updates for families, such as notices on the Regeneron ALN-6457 trial and the PRiSM trial, and helped the Prion Alliance set up the Prion Registry in 2017 to 2018. It credits Ionis Pharmaceuticals for grant support. Founding date, legal form and budget are not stated on any page opened. Information only, not medical advice.

Key facts

  • CJDISA says it was formed by grassroots nonprofit support organisations as an international coalition to fill a gap at the international level, acting for patients, families and people at risk of prion disease.
  • Its stated aims are to meet the educational, social, emotional, spiritual and practical needs of affected and at-risk people and carers, reduce stigma, promote research on early detection, prevention, treatment, quality of life and a cure, keep access to care, and help keep blood and food supplies safe.
  • The About page gives 14 member support organisations in 13 countries and a Friends and Advisors group of 32 prion researchers and professionals; the alliance is led by two co-chairs.
  • The directory lists 15 full members in 13 countries (Australia, USA with two groups, UK, Italy with two groups, Germany, Chile, Spain, Mexico, Canada, New Zealand, Portugal, Austria, India) and 5 associate members (Brazil, Pakistan, France, Japan, Turkey); the Mexican group FENDMEX joined as a member in 2022.
  • The CJD Foundation (USA) and the Fundacion Espanola de Enfermedades Prionicas (Spain) are among the listed full members, as are the UK CJD Support Network, the Australian CJD Support Group Network and CJD Care India.
  • CJDISA thanks Ionis Pharmaceuticals for grant support for awareness, global support networks and access to information; the amount and period are not given.
  • Its 2025 campaign page says International CJD Awareness Day is 12 November and offers a shared toolkit (video Globally united for prion disease, social media graphics, poster, infographic) with the hashtags cjdawareness and priondiseaseawareness.
  • The NeuroPrion Association home page carries a button linking to the CJDISA 12 November 2025 awareness campaign page.
  • The CJD Foundation also promotes 12 November as International CJD Awareness Day (wear purple) without naming an organiser, and a 2024 US House resolution, H. Res. 1518, supports 12 November as a national CJD Awareness Day without mentioning CJDISA.
  • On 23 September 2026 CJDISA posted the registry link for Regeneron trial NCT07832370 of ALN-6457 in symptomatic prion disease and a Regeneron managed access policy explaining how a treating physician can request compassionate use.
  • On 15 October 2026 it posted a community statement headed NN112 PRiSM now recruiting pre-symptomatic participants; the body could not be read.
  • Its research pages relay company statements, for example Gate Bioscience describing its prion program as preclinical and not ready for trials, and the site states that naming a trial or treatment is not an endorsement and is not medical advice.
  • A 2017 Prion Alliance post names CJDISA among the groups in contact with prion patients and families when the Prion Registry was launched, and a June 2018 update says Prion Alliance worked with the CJD Foundation, CJDISA and the Broad Data Donation Platform to set up the registry.
  • The UK CJD Support Network shows CJDISA-funded places and travel funding for its 2026 family support meeting.
  • The Australian CJD Support Group Network links to CJDISA from its About us menu.

Timeline

  1. 2017Prion Alliance launches the first version of the Prion Registry; its post names CJDISA among the groups working with families.
  2. 2018Prion Alliance update credits CJDISA, with the CJD Foundation and the Broad Data Donation Platform, in setting up the Prion Registry.
  3. 2022FENDMEX (Mexico) becomes a CJDISA member organisation.
  4. 2024H. Res. 1518 introduced in the US House in support of 12 November as CJD Awareness Day (a US measure, not a CJDISA one).
  5. 2025CJDISA international CJD Awareness Day campaign, Globally united for prion disease, linked from the NeuroPrion site.
  6. 2026UK CJD Support Network family support meeting with CJDISA-funded places (year inferred from the 2026 funding notice).
  7. 2026CJDISA posts Regeneron managed access policy and ALN-6457 trial registry information.
  8. 2026CJDISA posts a community statement on PRiSM opening to pre-symptomatic participants.
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