CJD Foundation Family Conference

The CJD Foundation Family Conference is typically held annually in July in Washington, DC. This year's event will be held virtually again, at no cost. We look forward to coming back in person soon! In the meantime, we hope you will enjoy the interactive moving roundtables and presentations of 2022 Virtual Conference.

Virtual Conference Kickoff - Saturday, June 18 | 12:00 – 3:30 pm Eastern

The 2022 Centers for Disease Control and Prevention (CDC) Report | Wednesday, June 15 | 7:00 pm Eastern

CJD Grant Research Recipients Overview | More details coming soon


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.

Saturday is devoted to learning about the latest scientific discoveries. With the help of our Medical Director and Scientific Director, we invite scientists conducting new and promising prion disease research to speak to our families about their work. On Sunday, we hear about the work of the CJD Foundation, including an overview of the information collected through our Questionnaires.

Monday is devoted to visiting your state representatives on Capitol Hill. We set up the 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.