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  • Invitation to attend our 2023 Family Support Meeting in Oxford

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Latest News

Results of PRN100 treatment programme published

 

Researchers at the Medical Research Council (MRC) Prion Unit at University College London (UCL) developed a monoclonal antibody, called PRN100, which was given to six UCLH patients with CJD between October 2018 and July 2019. The results have now been published in Lancet Neurology.
 
http://www.thelancet.com/.../PIIS1474-4422(22.../fulltext

 

Invitation to attend our 2022 Family Support Meeting

 

10-6-22

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We are pleased to announce that this year’s Family Support Meeting is booked for Friday 9th & Saturday 10th September, in Oxford (UK). We would like to invite all UK individuals and families whose lives have been touched by CJD to join us. 

The main meeting will take place on Saturday 10th September and there is no cost to attend. Registration and arrival refreshments will be available from 08:45, and the meeting will begin at 09:30. Talks will be given and time made for sharing and talking with others at the meeting. Lunch will be provided. We will aim to clost the meeting at 16:00, with the option of staying behind for further informal and supportive discussions. Many previous attendees have told us that this is the only opportunity they have had to talk in person with others who really understand their experiences. 

In addition to the main meeting, we have arranged an optional meal on the Friday 9th. The meal will begin at 19:30, with time beforehand to meet. This is an opportunity for attendees to mix with one another and the committee prior to the main meeting. We request a £20 per person contribution to attend the Friday meal. 

If costs are a barrier to you attending the meeting at all, please let us know. 

Click HERE to download a registration form, please return this via email to This email address is being protected from spambots. You need JavaScript enabled to view it. or post to PO Box 3936, Chester, CH1 9NG

For any queries, email This email address is being protected from spambots. You need JavaScript enabled to view it. or call 0800 774 7317 (lines open between 8am and 6pm, Tuesday and Friday). 

Following registration, you will receive information on how to access the meeting by road and rail. 

Many thanks and please don’t hesitate to get in touch if you have any questions.

 

To go to all Latest News items please click here


 

First Newsletter of 2022 available now

15-2-22

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Having last published a Newsletter in July 2019, the CJD Support Network is pleased to announce that our latest Newsletter (Jan 2022) is now available. Please click here for access. 

To go to all Latest News items please click here


New glossary of terms relevant to prion disease

25-1-22

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The language and terms we hear used around CJD and prion disease can be unfamiliar and this can feel overwhelming, particularly when we are first encountering it. In line with our aim of providing information and support to all affected by CJD and those at increased risk, we've put together a new glossary of terms relevant to prion disease which can be found, along with our other fact sheets, here. If there are any terms that you would like to see added to this glossary, please get in touch with us via email (This email address is being protected from spambots. You need JavaScript enabled to view it.) or telephone (0800 774 7317). 

To go to all Latest News items please click here


 

More Articles ...

  • Updated fact sheets on Iatrogenic and Genetic CJD now available
  • 2021 Christmas e-cards now available!
  • New Coordinator Appointed to the CJD Support Network
  • CJDSN Family Support Day - Saturday 13th November 2021, Manchester.

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News and Events

  • Spring 2022 Newsletter now available!

    May 13, 2022
    The CJD Support Network is pleased to announce that our latest Newsletter (Jan 2022) is now availabl... Read More...
  • Restricted service 5th-19th April

    April 01, 2022
    01-04-2022 The CJD Support Network will be temporarily unable to respond to emails between 5th and ... Read More...
  • Results of PRN100 treatment programme published

    March 17, 2022
      Researchers at the Medical Research Council (MRC) Prion Unit at University College London ... Read More...

Need To Talk

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