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  • Invitation to attend our 2023 Family Support Meeting in Oxford

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Latest News

Updated fact sheets on Iatrogenic and Genetic CJD now available

11-1-2022

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At the CJD Support Network, one of our key aims is to provide accurate, unbiased and up to-date information and advice about all forms of CJD. We are currently in the process of updating the information we provide, and are pleased to announce that new versions of our Iatrogenic CJD and Genetic CJD fact sheets are now available here. We extend special thanks to Professor Simon Mead (National Prion Clinic) and Professor Richard Knight (National CJD Research and Surveillance Unit) for their assistance in updating these resources. 

 We will continue to update our news page as further updated resources become available. 

To go to all Latest News items please click here


 

 

2021 Christmas e-cards now available!

07-12-2021

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At the CJD Support Network, we know that the festive period can be challenging for those who are caring for or missing people. E-cards are an excellent way of reaching out to those we love and reminding them we are here. We have designed a series of festively themed e-cards, including an option with wording that is appropriate to be sent to those who are struggling.

To go to our 'Don't Send Me A Card' webpage, where you can donate the amount you would have spent on cards and postage (or another amount if preferred) in exchange for up to 100 e-cards, simply click here. Once you have made your purchase, you will be sent an email with instructions of how to send your e-cards. 

Your recipients will be informed that the e-card was exchanged for a donation to the CJD Support Network and so not only will the e-cards you buy be helping us to continue offering support, they will also help to raise awareness of CJD. 

Thank you for your continued support! Please contact us if you have any queries at all. 

To go to all Latest News items please click here


 

 

New Coordinator Appointed to the CJD Support Network

 02-11-2021

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The CJD Support Network has appointed Beth Marsh as the new National Coordinator. Beth commenced the role in November 2021, succeeding the original Coordinator, Gillian Turner who has retired from this role, which she had held since 1995. 

Beth has been involved with the CJD Support Network committee since attending her first family support day in 2016, after losing her father to sporadic CJD. With a background in mental health and personal experience with the disease, Beth is committed to the network’s aims of providing emotional and practical support to those affected by all forms of CJD, and those at increased risk. 

Beth says: “I’m keen to build on the fantastic work the CJD Support Network already does in supporting and connecting people affected by CJD. I’d be delighted to hear from anyone who has fundraising or support ideas for the network and how we might continue to help in the best way we can.”

From November 2021, the CJD Support Network Helpline will be open 8am – 6pm on Tuesdays and Fridays, any messages received outside of these hours will be followed up as soon as possible. Alternatively, you can email This email address is being protected from spambots. You need JavaScript enabled to view it.. Administrative and general enquiries should be directed to This email address is being protected from spambots. You need JavaScript enabled to view it..

To go to all Latest News items please click here


 

CJDSN Family Support Day - Saturday 13th November 2021, Manchester.

28-09-2020 (Updated 25-11-2021)

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Our Family Support Day was held on Saturday 13th November at the Macdonald Manchester Hotel. 

Talks were heard from various speakers with with breaks for mid morning refreshments and lunch. The Family Support Day is a great opportunity to meet others who have lost loved ones or are currently caring for loved ones with CJD. We have been told during this and past support days that this is the only opportunity some families have had to talk with others who really understand what they are going through.

Everyone is welcome at our annual support meeting and we will be working on plans for the next meeting over the coming months. To recieve updates on our next meeting, including how to book your place, please do join our mailing list by completing the form at: https://www.cjdsupport.net/how-you-can-help-us/joining 

To go to all Latest News items please click here


 

More Articles ...

  • Coronavirus and the CJD Support Network
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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...

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