Policy News: Newly published Rare Disease Action Plan (England)
This year on Rare Disease Day (29th February) the Department of Health and Social Care (DHSC) published an update on
Student Voice Prize Essay – 2023 Entry
Back in October 2023 we applied to take part in the Student Voice Prize and were pleased to be paired
New Fact Sheet Available – for Local Professionals
We are pleased to announce the launch of our new Fact Sheet for Local Professionals. The fact sheet includes information
2024 Family Support Meeting – Registration now OPEN
We are pleased to invite anyone with a personal or professional connection to CJD and prion disease to attend our
Research News: “Iatrogenic Alzheimer’s disease in recipients of cadaveric pituitary-derived growth hormone”
A paper published this week in Nature Medicine reports the first evidence of Alzheimer’s disease that appears to have been
Hamburg Marathon for Colin
Nearly 15 years ago in May 2009, Paul’s Dad Colin was diagnosed with sporadic CJD. Just 4 months later, in
Temporary helpline closure – 1 day
Due to staff availability, our helpline will be closed on Friday 19th January however our emails will be monitored and
Marathon for Michelle
On 20th April 2023, Lee, his daughter, and their loved ones’ world was turned upside down when his wife Michelle
Dry January in memory of Pat
In memory of her good friend Pat Conlon, who passed away from sporadic CJD in November 2012, Phil is taking
2023 Memorial Roll
Our 2023 Memorial Roll can be found on our website HERE. The Memorial Roll has now been arranged into alphabetical