Category

events

Sep 04

UK – Annual Family Support Meeting, Friday 11th September, 2026

By events, news

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

Jun 11

Austria, Germany, Switzerland: Tri-Country Conference, 13th-15th September 2026

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* * SAVE THE DATE * * 

13-15 September 2026

WIEN: Drei-Länder-Tagung Deutschland-Österreich-Schweiz

Von Angehörige für Angehörige mitgestaltet: für Familien und Wissenschaftler

Programm folgt!

__________________________

We are currently planning the next conference for 2026 in Vienna, Austria.

When? 13th-15th September 2026

Website: selbsthilfegruppe-prionen-osterreich.webnode.page/

Austrian Family Support Group for Creutzfeldt-Jakob Disease and other Prion Diseases

CJK Initiative e.V. (Germany)

Nov 11

International CJD Awareness Day awareness campaign on November 12th 2025

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International CJD Awareness Day is November 12th

Be a part of our awareness campaign for social media

#cjdawareness #priondiseaseawareness

Social media graphics

  • Facebook post and cover
  • Instagram post
  • LinkedIn post

Information

  • A4 poster for International CJD Awareness Day 2025
  • Prion disease infographic

Click to download: CJDISA_Prion Disease infographic.pdfCJDISA_RememberNov_2025 (Facebook Cover).pngCJDISA_RememberNov_2025 (Facebook Post).pngCJDISA_RememberNov_2025 (Instagram Post).pngCJDISA_RememberNov_2025 (LinkedIn Post).pngCJDISA_RememberNov_2025_A4 poster.pdf

Click to download entire folder: Remember November Social Media

Videos to share 

Jun 18

Italy: Meeting, Milan – June 21, 2025

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A.I.En.P. – ONLUS

www.aienp.it

Care Amiche, Cari Amici,
mancano solo 5 GIORNI al nostro incontro del prossimo 21 giugno a Milano.
Per tutti coloro che non riusciranno a venire in presenza, l’Istituto Mario Negri che ringraziamo ha messo a disposizione al seguente link https://urly.it/319_7r per poter vedere l’incontro da remoto.
Sarà possibile assistere all’incontro e inviare le proprie domande esclusivamente via chat.
Come sempre, vi ricordiamo l’importanza di essere in presenza per poter confrontarsi con i ricercatori e clinici ma anche con altri familiari che hanno vissuto o stanno vivendo la stessa esperienza.
VI ASPETTIAMO!

A SABATO!

Dear Friends,
There are only 5 DAYS left until our meeting on June 21 in Milan.
For all those who will not be able to come in person, the Mario Negri Institute that we thank has made available at the following link https://urly.it/319_7r to be able to see the meeting remotely.
It will be possible to attend the meeting and send your questions exclusively via chat.
As always, we remind you of the importance of being in person to be able to deal with researchers and clinicians but also with other family members who have lived or are having the same experience.
WE ARE WAITING FOR YOU!
SEE YOU ON SATURDAY!
Jun 18

USA: Family Conference, Chicago, IL – July 11-13, 2025

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CJD Foundation (USA)

secure.qgiv.com/event/2025conference/

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 2024, Simon Mead, BM BCh, FRCP, PhD, Clinical Professor, MRC Prion Unit at UC London, Institute of Prion Diseases, London, England, presented the Keynote Address in Honor of Dr. Pierluigi Gambetti: Can Genetics Help in the Fight Against CJD?

Research Grant Reports: Thanks to our supporters, the CJD Foundation funds many research grants each year, and each of those researchers provided 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: Hear directly from family members whose loved ones had unique experiences with CJD and learned 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 are also pleased to recognize some key volunteers and leaders in the prion disease community. Winners of the Strides for CJD 2024 fundraising competition will also be recognized and memorial tributes to their loved ones and other highlights are shared.

 

Register by Email or Mail

Download, complete, and submit this registration form to register via email or mail. Registration costs $250.00.

Jun 18

Brazil: Family Panel – November 5, 2025

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dcjBRASIL

www.dcjbrasil.org

DCJBrazil Family Panel “A global union for prion disease awareness and support”

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

Restrictions on participation: Participation by invitation. For invitations, please contact Eriton Cunha via email (prionsprotein@gmail.com).