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Patient Association Events

Click to see upcoming events in 2024

Upcoming Patient Association Events

18th November 2023

CJD Support Group Network, Australia

18th November 2023

Fundación Española de Enfermedades priónicas, Spain

September & November 2023


15th & 16th September 2023

CJD Support Network, UK

2023 Family Support Meeting

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.

July 2023

CJD Foundation, U.S.A.

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:

2023 Conference Highlights, photos, and Video Clips

2023 Full Recordings of Presentations 

The 2024 CJD Foundation Family Conference will be held July 19-21, 2024, in Washington, DC. For information, contact