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 5^th.

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).

 

Program Schedule

Time	Session / Speaker	Topic / Title
09:00 – 09:15	Eriton Cunha	The dcjBRASIL: from the past to beyond
09:15 – 09:30	Tuane Vieira (to be confirmed)	RT-QuIC
09:30 – 09:45	Cristiane Rocha (dcjBRASIL)	Community engagement and awareness initiatives
09:45 – 10:00	Dr. Brian Appleby	Prion Disease Basics
10:00 – 10:10	Dr. Elizabeth Lucas	Genetic Counselling in Prion Disorders
10:10 – 10:20	Diana Oliveira	Grief Counselling and Family Support

☕ Coffee Break — 10:20 – 10:40

Drug Development Session

Time	Speaker / Organization	Topic / Focus
10:40 – 11:00	Erik Minikel & Sonia Vallabh	Drug Development
11:00 – 11:10	IONIS Pharmaceuticals	Drug Development
11:10 – 11:20	Gate BioScience	Drug Development
11:20 – 11:30	Sangramo Biotech	Drug Development

CJD Family Associations

Time	Organization / Representative	Presentation
11:30 – 11:40	CJD Foundation (USA)
11:40 – 11:50	CJDISA – International CJD Awareness

Interactive Session & Closing Remarks

Time	Session	Description
11:50 – 12:50	Open Discussion / Q&A	Audience questions, reflections, and collaborative dialogue with all panelists
12:50 – 1:00 PM	Closing Remarks	Session summary and acknowledgements