Skip to main content
Category

Upcoming patient association events

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

By events, news, Upcoming patient association events

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.

Brazil: Family Panel – November 5, 2025

By events, news, Upcoming patient association events

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).