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CJD Support Network (UK), national charity for all forms of CJD and prion disease logo

CJD Support Network (UK), national charity for all forms of CJD and prion disease

The CJD Support Network (CJDSN) is a small UK charity, registered in England and Wales as charity 1097173, that supports people affected by any form of Creutzfeldt-Jakob disease or other human prion disease, including people told they are at increased risk through genetics, blood or surgical instruments. It was set up in 1995 and says it became a registered charity in 2003; its constitution was adopted on 15 January 2003 and last amended in November 2012, according to excerpts of the Charity Commission register. It runs a freephone helpline, email support, quarterly online support groups, an annual in-person family support meeting, care grants of up to 500 pounds and small research grants on any aspect of prion disease. It has one paid post, a national coordinator, and is governed by a management committee chaired by an Edinburgh clinical neurologist, with a National Prion Clinic and MRC Prion Unit neurologist among its members. It works closely with the National Prion Clinic and the Edinburgh surveillance and nursing services, which act as referral partners for its care grants, and it is a full member of the CJD International Support Alliance, which funded places at its 2026 family meeting. Its news pages are one of the clearer public records of the 2025 and 2026 cuts to UK CJD surveillance. Information only, not medical advice.

Key facts

  • Registered charity 1097173 in England and Wales; it describes itself as the only UK charity for all forms of CJD and prion disease and says it has supported people for over 20 years.
  • The charity says it was set up in 1995 and registered in 2003; register excerpts give a constitution adopted 15 January 2003, amended 17 March 2003 and 3 November 2012. No registration date was seen.
  • Its registered objects are relief of people affected by CJD and other human prion diseases and their carers through information, advice and support, and advancement of education and research on these diseases; it operates across England and Wales, makes grants to individuals and gives advice and advocacy (register search excerpt only).
  • For the year ending 31 March 2025 it reported income of 260,541 pounds and spending of 38,640 pounds, with 8 unpaid trustees; gross income in the five years before ranged from about 35,000 to about 101,000 pounds. These are search excerpts of the register, matched for 2025 by a third party aggregator.
  • Freephone helpline 0800 774 7317, open Tuesday morning to mid afternoon and Wednesday and Thursday late morning to early evening, with voicemail callbacks; a support line policy is on a one year pilot to be reviewed in March 2027.
  • Care grants of up to 500 pounds help with care costs where prion disease causes financial hardship, normally one per family; applications come through referral partners named as National Prion Clinic clinicians, the CJD National Nursing Service in Edinburgh and the National CJD Diagnostic Advisory Service.
  • Small research grants are offered when funds allow. Awards listed run from 2019 to 2023 and cover prediction of care milestones in CJD, onset of disease in healthy at-risk people, prion aggregates in archived pituitary growth hormone linked to UK iatrogenic CJD, hsPMCA testing of CSF to find missed variant CJD, and a test of single-session group Acceptance and Commitment Therapy for people living at risk, which the grants page calls randomised but which was published in 2026 as a non-randomised waitlist-controlled feasibility study, study-act-at-risk-prion; amounts are not published.
  • Since 2023 it runs quarterly online evening support groups on four themes: sporadic CJD, inherited prion disease, iatrogenic or acquired CJD, and former carers.
  • Its management committee had 13 named members in 2023 and 2024, chaired by a professor of clinical neurology linked to the Edinburgh surveillance unit and including a professor of neurology at the MRC Prion Unit; the NCJDRSU 2023 annual report also states that the Edinburgh neurologist chairs the committee. Its current about page lists him as Trustee Board Chair.
  • Its annual reports call liaison with the National Prion Clinic and the NCJDRSU, especially their nursing staff, very important.
  • It is a full member of the CJD International Support Alliance; its coordinator met CJDISA directors at Prion 2023 and presented with CJDISA representatives at Prion 2024, and CJDISA funded travel and accommodation places at its September 2026 family meeting.
  • It joined Genetic Alliance UK in 2023.
  • On 1 April 2025 it reported that the NCJDRSU had ceased on 31 March 2025 after the NIHR did not renew funding, listing the services that would continue; on 23 March 2026 it reported that funding for the Edinburgh National CJD Diagnostic Advisory Service ends on 31 March 2026. Both are secondary reports by the charity.
  • It relays trial news to UK families through CJDISA, for example the September 2026 note that enrolment in the Ionis PrProfile ION717 study is complete and its primary completion date moved to April 2027; it describes no direct role in the trial.

Timeline

  1. 1995CJD Support Network set up.
  2. 2003Constitution adopted (register search excerpt); the charity says it registered in 2003.
  3. 2012Constitution amended (register search excerpt).
  4. 2019First research grants listed on its research page.
  5. 2022Research grant awarded for work on prion aggregates in archived pituitary growth hormone linked to UK iatrogenic CJD.
  6. 2023Joins Genetic Alliance UK.
  7. 2023Family support meeting at St Anne's College, Oxford; two new research grant holders present their projects.
  8. 2023Online AGM.
  9. 2024Online AGM; 2024 report notes the coordinator presented at Prion 2024 with CJDISA.
  10. 2025Year end with income of 260,541 pounds and spending of 38,640 pounds (register search excerpt).
  11. 2025Publishes an update that the NCJDRSU ceased on 31 March 2025.
  12. 2026Publishes notice that Edinburgh diagnostic advisory service funding ends on 31 March 2026.
  13. 2026Annual family support meeting with CJDISA-funded places, announced 3 September 2026.
  14. 2026Relays CJDISA update on PrProfile enrolment completion.
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