International CJD Awareness Day is November 12th
Be a part of our awareness campaign for social media.
Post and share that you are ‘Globally united for prion disease awareness’ to your local CJD/prion disease community to raise awareness.
Available to download are:
- Facebook posts and group cover photo
- Instagram posts
- LinkedIn posts and background
- Teams/Zoom Background
- A4 poster to print out
- Share our video (posted on Youtube) and create your own. Link to video: Globally united for prion disease video
Click here to access the awareness campaign downloads
Family Meeting
The CJD Support Network Family Support Meeting took place in Chester this year on 6th and 7th September. On Friday 6th, fifty one of us got together for an informal evening meal – an opportunity for new attendees to meet others personally affected by prion diseases, and for those who have been to the meeting before to see some familiar faces before the main meeting on Saturday 7th. The main meeting included talks from clinicians and scientists, round table discussions and an extra long lunch break to give extra time for connecting with one another.
We would like to say a huge thank you to all who attended and made this a supportive event.
Feedback on what people found most beneficial about the day included:
“Having experts answer the multitude of questions I had, I think it’s hard to move forwards when questions keep our minds in the past.”
“Meeting the other families, it helped to talk and not feel so alone with what happened to our dad. Hearing from the experts was also good and I feel I have a better understanding of CJD what happened to my dad.”
Over the coming months, our coordinator Beth and the executive committee will work together to begin planning our Family Support Meeting for 2025, taking on board all of the suggestions received from this year’s attendees in our efforts to make the day as beneficial and supportive as possible for those who attend.
CJD Foundation Family Conference
Each year, the CJD Foundation hosts a family conference in Washington DC. Scientists and other professionals provide keynote presentations, reports on research, and other sessions, and family workshops are featured.
In addition, families affected by prion disease are able to connect with the professionals in small groups and one-on-one. Families are educated about how to share their stories with legislators and educate their representatives about the importance of surveillance and research funding in the battle against CJD.
For more information on past and upcoming conferences, please visit:
2024 Conference Highlights, photos, and Video Clips
2024 Full Recordings of Presentations
The 2025 CJD Foundation Family Conference will be held July 11-13, 2025 in Chicago, IL. For information, contact Help@CJDfoundation.org
Wiener Symposium Internationaler Creutzfeldt-Jakob-Krankheit (CJD)-Awareness Day, 6th November 2023
CJD awareness: Wiener Weinwandertag, 23rd September 2023
Our 2023 Family support Meeting was held on 15th & 16th September 2023 at St Anne’s College, Oxford. Over 45 attendees joined us for a morning of educational talks and an afternoon of time for personal sharing and asking questions to the professionals in attendance.
2023 Family Support Meeting Agenda
Feedback on what was most helpful about the day included:
“The opportunity to ask questions as it helped clarify things that i was unsure about but also to share in context of our experiences.”
“Being able to talk to experts about the disease and getting some comfort in the answers. Meeting people in the same position as myself, and some of whom I met last year.”
All talks were recorded and can be listened to via a playlist on our YouTube channel HERE.
We will be officially announcing the location and dates of our 2024 Family Support Meeting in our Autumn newsletter, and opening registration early next year with the release of our Winter newsletter. If you would like to be added to our mailing list to receive our newsletter, please complete the form HERE.