Click to see all upcoming Patient Association Events
Austrian Family Support Group for Creutzfeldt-Jakob Disease and other Prion Diseases
CJK Initiative e.V. (Germany)
The CJD Support Network UK‘s annual Family Support Meeting at St Anne’s College, Oxford is designed to be a welcoming, friendly and informative day. It offers opportunities to meet others, learn more about CJD and prion diseases, receive updates on the current context of CJD and prion disease research and treatment, and share time together. There is plenty of space to step away if you need to, and no expectations on anyone other than to contribute to a safe environment for all. Attendees include leading clinical experts and many of our Trustees, alongside both first-time attendees and regular visitors. Family has a broad meaning, including friends and chosen family.
The main day is Saturday, 12th September, with an optional welcome dinner on Friday, 11th September. All meals and sessions are free to attendees. On site accommodation is available at a subsidised rate of £43 per person per night. If accommodation or travel costs would create a barrier to your attendance, please feel free to get in touch with us. All such queries will be considered discreetly.
Information Link: Family Support Meeting
In addition, we hold an online support group for those affected by prion diseases on the second Tuesday of every month.
You can find out more and sign up here: CJD Support UK Events
CJD Foundation Family Conference
The 2026 CJD Foundation Family Conference was held July 10-12, 2026 in Chicago, IL.
The CJD Foundation’s Family Conference, held annually, brings together prion disease experts and families affected by prion disease.
Over two days, attendees meet with other families, share stories, hear from grant recipients about their research, learn more about CJD Foundation programs and government programs, and have opportunities to become advocates for prion disease funding and research.
Each year the Family Conference gathers researchers, medical professionals and families in person. Here are some of the highlights.
Family Workshops: Friday focuses on families, with sessions including Sporadic CJD Workshop, Genetic Prion Disease Workshop, Clinical Prion Disease Basics Information Session, Prion Disease Research Overview, and Bereavement Workshop. The day concludes with a welcome reception to families to meet one another or catch up with friends met in prior years.
Keynote Presentation: In 2026, Brian Appleby, MD, Director, National Prion Disease Pathology Surveillance Center, Case Western Reserve University School of Medicine, Cleveland, OH, presented the Keynote Address in Honor of Dr. Pierluigi Gambetti: “Why There Is Reason to be Moore Hopeful About the Field of Prion Disease.”
Research Grant Reports: Thanks to our supporters, the CJD Foundation funds many research grants each year, and each of those researchers provides an overview of their work at the conference, followed by Q&A sessions.
Moving Roundtables: In this segment, always a favorite of both families and professionals, families rotate among tables in small groups, and sit for informal Q&A with keynote and other speakers, workshop leaders, and grant recipients.
CDC and NPDPSC Updates: Experts from the Centers for Disease Control and Prevention and National Prion Disease Pathology Surveillance Center provide updates on their important work.
Family Panel: We hear directly from family members whose loved ones had unique experiences with CJD and learn how they are now making a difference in the fight against CJD.
Banquet: At each year’s banquet, we present an overview of the CJD Foundation’s accomplishments and year in review. We also recognize key volunteers and leaders in the prion disease community. Winners of the Strides for CJD fundraising competition present memorial tributes to their loved ones, and other highlights are shared.
Drug Development Updates: We host a panel discussion with companies that are developing drug therapies.
The 2027 Conference is taking place July 9-11 in Chicago, IL.
DCJBrazil Family Panel “A global union for prion disease awareness and support” (11/05/2025)
Description: This family panel brings together voices from across the prion disease community to share their lived experiences. Through personal stories, challenges, and moments of hope, families offer unique insight into life with a rare disease. This panel will also include a speech about how families can handle this very difficult time and an enlightening talk about prion disease therapies.
Format and duration: This panel will be in a hybrid format and will especially happen on November 5th.
Target audience: Families affected by prion diseases.
Relevance: The aims of this panel are:
• Empower families by sharing their journeys
• Encourage community support and advocacy
• Help families how to handle this process
• Inform about prion disease therapies
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.
The 2025 CJD Foundation Family Conference was held July 11-13, 2025 in Chicago, IL.
Members of the Austrian support group for families affected by prion diseases together with our colleagues from Germany and Switzerland, recently organized a joint conference on prion diseases in the German-speaking region. The event took place from June 19–20 in Göttingen, Germany, and aimed to bring together scientists and affected families. The first day focused on scientific presentations, while the second day was organized by and for families.
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.
