CJD Foundation Family Conference

Save the Date!

The 2023 CJD Foundation Family Conference will take place from Friday, July 14, 2023 to Sunday, July 16, 2023. Advocacy Day will be held on Monday, July 17, 2023.

Location: Hilton Washington DC Capitol Hill (used to be called the Washington Court Hotel), 525 New Jersey Ave NW, Washington, DC 20001

The CJD Foundation's Family Conference, held in Washington, D.C., brings together prion disease experts and families affected by prion disease.

Saturday and Sunday, we’ll learn about the latest scientific discoveries. With the help of Dr. Brian Appleby, our Medical Director, we invite scientists conducting new and promising prion disease research to speak to our families about their work. We’ll also hear about the work of the CJD Foundation, the National Prion Disease Pathology Surveillance Center, the Centers for Disease Control and Prevention, and the Alberta Prion Research Institute.

Monday is devoted to visiting your state representatives on Capitol Hill. We set up appointments for those families wishing to participate and provide advocacy training on Sunday afternoon. This is a unique opportunity to make our voices heard and to request continued funding for prion disease surveillance.


In 2002 we hosted our first CJD Foundation Family Conference in Washington, D.C., with the hope that families and researchers could learn from each other if we brought them together. We found that the conference provided a unique opportunity for attendees to begin or continue their healing process. It was also the first time many of the scientists had ever met a family member touched by the disease they were spending their lives researching.

The CJD Foundation Family Conference has grown over the years, attracting many more North American families, as well as families from other countries. We’ve added a Family Workshop Friday afternoon to offer an opportunity for families affected by a genetic prion disease to meet and discuss issues of concern.