CJD Support Network UK

UK Charity providing emotional and practical support for Creutzfeldt-Jakob Disease (CJD) Charity No. 1097173 #CJD #Prion

[CJD Support Network UK @supportcjd]

We are the only UK charity dedicated to all forms of CJD and prion disease. We offer emotional and practical support to affected individuals and those at increased risk. You can donate at https://t.co/qZL0NySfVi
Thank you for visiting us on X.

[CJD Support Network UK @supportcjd]

2026 has started on track for Cogs's Clever Quizzes in South Wales.  Ian says:

A cold and damp Sunday on 1 February saw a small but dedicated band of regular quizzers attend the monthly "Cogs's Clever Quiz" at the New House Inn, North Cornelly. Entry https://t.co/WDPaZZPCxR

[CJD Support Network UK @supportcjd]

The CJD Support Network sends you and yours all best wishes for this festive season, and for the year ahead.

Send an E-Card and Support the CJD Support Network

Should you need to send a last minute card, we are pleased to offer a selection of e-cards https://t.co/g8wuH2hnmF

[CJD Support Network UK @supportcjd]

We are bringing International CJD Awareness Day to an end on our socials. Thank you for reading sharing or sharing.

Thinking of everyone affected by prion diseases, appreciating the carers and supporters, thanking the researchers for hope.

#CJDAwareness
#PrionDiseaseAwareness

[CJD Support Network UK @supportcjd]

Raising #CJDAwareness and #PrionDiseaseAwareness is helped by connections with other groups. These do invaluable work supporting rare disease charities and CJD support groups. 💛

@GeneticAll_UK Genetic Alliance UK

@RareBeacon Beacon for Rare Diseases

https://t.co/hCe3EjT64V

[CJD Support Network UK @supportcjd]

Challenge events, head shaves, crafts and quizzes; we have been privileged to be the beneficiary of the community's fundraising efforts. This allows us to support more people as more people are affected, alongside existing friends. #CJDAwareness #PrionDiseaseAwareness

[CJD Support Network UK @supportcjd]

Each year we create a video to remember loved ones lost to CJD and prion disease in the UK. Thank you to those who have shared photos with us. In loving memory. 💛 #CJDAwareness #PrionDiseaseAwareness
https://t.co/K03I7AgzuI

[CJD Support Network UK @supportcjd]

From designing tote bags to writing letters, Dave is an active supporter of our charity. Dave is also at an increased risk of iatrogenic CJD. We are a resource for people affected by and at risk of all forms of prion disease in the UK.
#CJDAwareness
#PrionDiseaseAwareness

[CJD Support Network UK @supportcjd]

Today our fellow UK organisation @curecjdcampaign launch an international fundraising effort. Whilst we focus on support, community and information for those affected, their focus is research. We are pleased to share their informative thread:
#CJDAwareness #PrionDiseaseAwareness

[The Cure CJD Campaign @curecjdcampaign]

🧬 The Cure CJD Campaign launches an international fundraising effort to raise £9 million for Phase II clinical trial of #PRN100 — the most promising treatment ever developed for prion diseases. Read the full Press Release: https://t.co/y9HgNdZmtn

#CJD #PrionDiseases #PRN100

[CJD Support Network UK @supportcjd]

There are no approved prion disease treatments however international researchers like https://t.co/PN5wKDRWu5 @SangamoTx @prionalliance @ionispharma @MRC_Prion give hope. For treatments being assessed/considered, visit: https://t.co/6ohcIbs5cr
#CJDAwareness #PrionDiseaseAwareness

[CJD Support Network UK @supportcjd]

Today, we are Globally United as a CJD and Prion Disease community. This📽️represents members of the CJD International Support Alliance. CJDISA assists the development of new organisations around the world💛
#CJDAwareness
#PrionDiseaseAwareness
https://t.co/MrI0abxVhS

[CJD Support Network UK @supportcjd]

We are a proud member of the CJD International Support Alliance, bringing together CJD support organisations across the world. They produced this useful infographic of how the three types of CJD fit together under the umbrella of 'CJD'.
#CJDAwareness
#PrionDiseaseAwareness

[CJD Support Network UK @supportcjd]

In the UK scientists are actively researching CJD and ways to cure it. We, the CJD Support Network, focus on support for those affected and information for all, and @cureCJDcampaign works to raise money for research: https://t.co/BAD91asiU4
#CJDAwareness
#PrionDiseaseAwareness

[CJD Support Network UK @supportcjd]

What are CJD and prion diseases?
Prion disease starts when these normal proteins in the brain misfold and build up, causing damage.

CJD and prion diseases are rare, progressive and currently always fatal, with no existing treatments.
#CJDAwareness #PrionDiseaseAwareness

[CJD Support Network UK @supportcjd]

We are proud to recognise International Creutzfeld-Jakob Disease Awareness Day today. Members of the global prion disease community come together to raise awareness of CJD and prion diseases, highlight support and recognise ongoing research.
#CJDAwareness
#PrionDiseaseAwareness

[CJD Support Network UK @supportcjd]

12th November is International CJD Awareness Day. This is a day when members of the prion disease community around the world come together to raise awareness of CJD and prion diseases, highlight the available support and recognise ongoing research.

We https://t.co/55ZMeRJqYF

[CJD Support Network UK @supportcjd]

On a beautiful day in July, Claverley Cricket Club hosted a match to raise funds for the CJD Support Network in memory of Louise Barnes.  Claverley Legends took on Penn Legends and the game was well fought with good humour.  Onlookers enjoyed their https://t.co/fg4pdoEDFg

[NHS Lothian @NHS_Lothian]

The UK wide NHS nursing team are here to support patients diagnosed with Creutzfeldt-Jakob Disease (CJD) as well as the local professionals involved in their journey.

Get in touch by emailing [email protected]

@supportcjd #NHSScotland @NHSEngland

[CJD Support Network UK @supportcjd]

You may’ve noticed we’ve been a little quieter than usual. We’re currently recruiting a new National Coordinator & focusing on a smooth handover.

Our support services remain active:

📞 0800 774 7317 (Tues & Fri, 8am–6pm)

📧 [email protected]

💬 https://t.co/CcvFEmAzW6

[CJD Support Network UK @supportcjd]

📢 Job still open!
We’re aiming to interview for the National Coordinator role at @CJDsupport w/c 26 May — so if you're planning to apply, get your application in soon!
🔗 https://t.co/Xim8y4Ptiw

Please share 💛