Cure CJD Campaign

The Cure CJD Campaign is a UK charity fund that raises money for treatment research on CJD and other prion diseases. It describes itself as set up by people personally affected by prion disease and is a fund within UCLH Charity. It funds work at the MRC Prion Unit at UCL, and it is a listed funder of the 2022 first-in-human PRN100 paper. On 6 November 2025 it launched an international appeal for 9 million pounds (10.2 million euros) to pay for a Phase II trial of PRN100, while its own web pages still give a 10 million pound target. No amount raised toward that appeal is published, and no trial start date, site list or patient number has been stated. Information only, not medical advice.

Key facts

  • The campaign calls itself a fund within UCLH Charity and cites registered charity number 1165398.
  • The charity is volunteer-led and was formed by people personally affected by prion disease.
  • Its home page says donations passed 1 million pounds since the campaign began in 2016, a milestone reached in September 2024.
  • The launch release of 6 November 2025 asks the public, foundations and major donors for 9 million pounds (10.2 million euros) for a Phase II PRN100 trial in CJD.
  • The home page and the What is CJD page still state a 10 million pound goal for Phase II, so the campaign's own pages disagree with its release.
  • The release names the MRC Prion Unit, UCL, UCLH and UCLH Charity, but no trial sites, patient numbers, duration, start date or amount already secured.
  • The 2022 Lancet Neurology paper reports six people with probable CJD treated with PRN100 at University College London Hospital between October 2018 and July 2019 under a Specials Licence; dosing was well tolerated but all treated patients kept declining.
  • The paper lists the Cure CJD Campaign, the NIHR UCLH Biomedical Research Centre, the Jon Moulton Charitable Trust and the UK Medical Research Council as funders, and notes that the senior author is a director and shareholder of D-Gen, which holds IP on PRN100.
  • The site links to the CJD Support Network as a resource and carries a Fundraising Regulator badge.

Timeline

  1. 2016Campaign begins raising money.
  2. 2018PRN100 treatment programme starts at University College London Hospital; it ran to July 2019.
  3. 2022Lancet Neurology publishes the PRN100 treatment programme evaluation, with the campaign among funders.
  4. 2024Donations since 2016 reach 1 million pounds.
  5. 2025Launch release dated 6 November for the 9 million pound Phase II appeal, ahead of International Prion Disease Awareness Day on 12 November.

Last checked 1 November 2026

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