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Get in Touch

If your life has been touched by CJD and prion disease, whether personally or professionally, we are here to support you.

Ways to reach out

Call our helpline

Our helpline is open from 8am – 6pm, every Tuesday and Friday. Call us for a listening ear and support at: 0800 774 7317.  

Join our Facebook community

Connecting with others who have shared experiences can be extremely supportive. Join our closed Facebook group.


We offer a range of factsheets for individuals, families, and professionals wishing to learn more about CJD and prion diseases, and related topics. Visit our factsheets page or get in touch for more information.

Contact us via email

Not feeling up to talking on the phone? Contact our support email address at [email protected].

Care grants

We offer grants for those who are in need of financial support to care for a loved one with prion disease. Visit our care grants page or get in touch for more information.

Support Events

We run a range of online support groups and an annual in-person support meeting. Visit our news and events page for information on upcoming events.