supportcjd Profile Banner
CJD Support Network UK Profile
CJD Support Network UK

@supportcjd

Followers
442
Following
458
Media
234
Statuses
546

UK Charity providing emotional and practical support for Creutzfeldt-Jakob Disease (CJD) https://t.co/jdR5nWNnH2 Charity No. 1097173 #CJD #Prion

United Kingdom
Joined January 2015
Don't wanna be here? Send us removal request.
@supportcjd
CJD Support Network UK
1 month
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.
0
0
4
@supportcjd
CJD Support Network UK
23 hours
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
Tweet card summary image
cjdsupport.co.uk
The CJD Support Network sends you and yours all best wishes for this festive season, and for the year ahead.
0
0
1
@supportcjd
CJD Support Network UK
1 month
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
0
1
6
@supportcjd
CJD Support Network UK
1 month
Raising #CJDAwareness and #PrionDiseaseAwareness is helped by connections with other groups. These do invaluable work supporting rare disease charities and CJD support groups. đź’› @GeneticAll_UK Genetic Alliance UK @RareBeacon Beacon for Rare Diseases https://t.co/hCe3EjT64V
0
5
8
@supportcjd
CJD Support Network UK
1 month
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
0
1
3
@supportcjd
CJD Support Network UK
1 month
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. đź’› #CJDAwareness #PrionDiseaseAwareness https://t.co/K03I7AgzuI
0
1
4
@supportcjd
CJD Support Network UK
1 month
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
0
0
2
@supportcjd
CJD Support Network UK
1 month
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
@curecjdcampaign
The Cure CJD Campaign
1 month
🧬 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
0
2
4
@supportcjd
CJD Support Network UK
1 month
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
0
2
6
@supportcjd
CJD Support Network UK
1 month
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
0
0
1
@supportcjd
CJD Support Network UK
1 month
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
0
1
2
@supportcjd
CJD Support Network UK
1 month
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
0
0
5
@supportcjd
CJD Support Network UK
1 month
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
0
1
1
@supportcjd
CJD Support Network UK
1 month
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
0
1
1
@supportcjd
CJD Support Network UK
1 month
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
Tweet card summary image
cjdsupport.co.uk
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
0
0
2
@supportcjd
CJD Support Network UK
2 months
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
cjdsupport.co.uk
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
0
0
0
@NHS_Lothian
NHS Lothian
7 months
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 loth.specialistncjd@nhs.scot @supportcjd #NHSScotland @NHSEngland
0
1
1
@supportcjd
CJD Support Network UK
7 months
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) 📧 support@cjdsupport.co.uk 💬 https://t.co/CcvFEmAzW6
0
0
3
@supportcjd
CJD Support Network UK
7 months
📢 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 💛
cjdsupport.co.uk
The CJD Support Network is seeking applicants for the role of National Coordinator. This largely autonomous role offers the opportunity to make a meaningful
0
0
0
@supportcjd
CJD Support Network UK
8 months
📢 The CJD Support Network is recruiting for National Coordinator📢 🔗 Learn more & apply: https://t.co/Xim8y4Ptiw 💛 Please share!
0
0
0