The CJD Support Network's annual Family Support Meeting has been arranged for the 13th and 14th November 2020 at the Manchester MacDonald's hotel.

Due to these unprecedented times and the uncertainty of the progress of the covid19 epidemic, we realise that it may not be possible to go ahead with these arrangements. 

If, because of Government guidelines regarding social isolation and the safety of those attending, we are not able to go ahead with the Manchester hotel arrangements, we are making plans to hold a virtual Family Support Meeting, which you will be able to join by computer, tablet (such as an iPad) or phone. 

We will announce further details of this nearer November, including the meeting content and instructions on how to take part.

Meanwhile, please do follow all Government guidelines and stay safe.

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Donations
A particular thank you to everyone who is continuing to support the CJD Support Network through your donations, despite it not be possible for you to take part in, or organise fundraising events.

We would also like to say how sorry we are, to those of your who have had your planned events cancelled due to the Coronavirus epidemic. We hope that you may be able to reinstate these when life returns to normal.

We rely completely on public donations for our funding, but along with most charities, due to social isolation, we have seen a reduction in these, so it is brilliant that so many of you are continuing to make donations even if your fundraising events have been postponed.

If you would like to make a donation to the Network, please go to our How to donate  page or the How you can Help Us menu item on the left.

Thank you all so much.

Service as normal
We would like to assure everyone that the CJD Support Network services continue to be available during this time of unprecedented disruption throughout the World.

For the latest information about our Family Support Meeting in November, please click here (this will open in a new window)

As well as all our other services our free helpline is always available on 0800 085 3527 .

Through our helpline, we provide information and support 24 hours a day and of course all our information booklets and newsletters are available to download from our website, from which you can also contact us by online email. For any of these services, please use the menu on the left.

To see how the Coronavirus and COVID19 situation has affected the service provided by the National CJD Research and Surveilance Unit in  Edinburgh, please click here to visit their website.

Similarly to see a statement regarding Coronavirus and COVID-19 from the National Prion Clinic at UCL - London please click here to vsit their website.

Finally may we express our best wishes to everyone, to keep yourself and your families safe and healthy during this unique and worrying time.

PLEASE, PLEASE minimise contact with others and follow Government guidelines

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The CJD Support Network has been selected as a 'Core Participant' in the Infected Blood Enquiry

To find out more about the Inquiry please click here

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Updated 6 February 2020 - In 2018, University College London Hospital (UCLH) began treating a patient with Sporadic CJD, with the PRN100 drug, which has been developed by researchers at the Medical Research Council (MRC) Prion Unit, at University College London. This drug, which had not been used in humans before, was administered after a judge confirmed that although the drug is unlicenced, it was lawful and in the patient’s best interests for them to receive treatment.

The sixth patient has recently started  this antibody treatment.

In 2019, Professor John Collinge, Director of the MRC Prion Unit at UCL, said: “All of these patients have been at different stages of their disease when they began to receive the antibody. It is too early to determine if, or to what extent, the treatment has had an impact on their condition.”

To go to the latest update article on the UCLH website, please click here 

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