CJD Support Network UK

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

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] 💬 cjdsupport.co.uk/support-events/

📢 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! 🔗 cjdsupport.co.uk/job-opportunit… Please share 💛

📢 The CJD Support Network is recruiting for National Coordinator📢 🔗 Learn more & apply: cjdsupport.co.uk/job-opportunit… 💛 Please share!

📢 We're having intermittent email issues. You may experience problems sending to or receiving from our email addresses. We are working to resolve the issue as quickly as possible. Feel free to reach out to us by telephone (0800 774 7317) or social media with urgent messages.

📞The @supportCJD helpline is open on Tuesdays and Fridays, 8am-6pm on 0800 774 7317 Closures for Mar 2025: Tues 25th (all day) Fri 28th (all day) You can also request a call back through our website here:👉cjdsupport.co.uk/helpline/ Thank you for your understanding and support!💛

We're pleased to share our final update on @supportCJD's engagement with policymakers around Rare Disease Day 2025, & highlight some work we've been doing since!🌟 👉Click for a summary of our recent activities and to view our Political Activity Statement cjdsupport.co.uk/the-cjd-suppor…

Thank you to @Peter_Dowd for tabling questions for the @supportCJD community, and to @AshleyDalton_MP and @SKinnock for their responses. Read them in full here: tinyurl.com/mh2uwuhe Further posts on their way with the questions, responses and some thoughts from us! 😊💛

Wonderful to see @iqbalmohamedMP supporting the @supportcjd community at the Westminster #RareDiseaseDay Reception, meeting with committee member Andrew & volunteer Alice after being invited by constituent Brian, a CJD member. We look forward to staying connected! 💛

Great to connect with @AshleyDalton_MP at Westminster Rare Disease Day Parliamentary Reception yesterday on key issues for the prion disease community. Pictured with Andrew @supportcjd & Prof John Collinge @MRC_Prion... Looking forward to staying in touch! #RareDiseaseDay 💛

Another proud moment for us on #RareDiseaseDay...☺️ our volunteer Dave's work features in @GeneticAll_UK's 'More than you can imagine: an anthology of rare experiences' officially published today following launch at Rare Disease parliamentary receptions: tinyurl.com/yc82kzkp