An update on Ionis Pharmaceutical’s PrProfile ION717 clinical trial
An update on Ionis Pharmaceutical’s PrProfile clinical trial to evaluate the safety, tolerability, pharmacokinetics, and pharmacodynamics of ION717 in people
CJDSN Family Support Meeting 12 September – CJDISA Funded Places
We are very pleased to share an important update ahead of our CJDSN Family Support Meeting next week. Thanks to
Lito Sousa – CJD Diagnosis and Queries
The CJD Support Network was saddened, as we always are with any diagnosis of a prion disease, to learn of
Baroness Casey launches the Big Conversation on Social Care in England with the public
An Independent Commission on Adult Social Care is currently running under the leadership of Baroness Louise Casey. This may concern
Government Update: Responsibility for Rare Disease Policy
Update as of August 2026: Preet Kaur Gill has now left this post. No new holder has been announced as
The Broad Institute Announces First-in-Human Clinical Trial to Evaluate Potential New Drug: PrP-siRNA
We are glad to share a research update from the USA and the Broad Institute. The Institute, based in Cambridge
Julia Davenne: A Celebration of her Life in Art – An Exhibition in Support of the CJD Support Network
If you are in London between 22nd and 26th April, 2026, you are invited to an exhibition organised by Emma
100 Miles in May for Taff – A Daughter’s Tribute
Jodie has let us know that she is undertaking a step challenge in memory of her beloved Dad, Stafford, known
End of an Era for CJD Surveillance, Research and Support in the UK
The National Diagnostic Advisory Service (NCJDAS) in the University of Edinburgh will cease operating on 31/3/26. From 1980 to 1984,
Cogs’s Clever Quizzes for Darlene Well Underway for 2026, plus an Invitation
2026 has started on track for Cogs’s Clever Quizzes in South Wales. Ian says: A cold and damp Sunday on