The CJD Foundation's Family Conference, held annually 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 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 CDC, APRI, the NPDPSC.

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.

Sponsorship Opportunities

If you can, consider helping to cover conference expenses by sponsoring a meal, binders, conference bag, flowers, or any of the other options. Registration fees cover just a portion of costs – your generous sponsorships and donations enable us to continue hosting this outstanding conference.

If you prefer to complete your registration offline, please download this form and follow the instructions to mail, email or fax it in.

Event Details

July 12 - 14, 2019

Washington Court Hotel
525 New Jersey Ave NW
Washington, DC 20001

Advocacy Day:
July 15, 2019

Agenda At a Glance

Friday Sessions

  • Sporadic Prion Disease Workshop
  • Genetic Prion Disease Workshop
  • Prion Disease Overview
  • Bereavement Workshop
  • Welcome Reception

Saturday Sessions

  • Keynote Speaker: Richard Knight, BA, BM BCh, FRCP(E)
  • Grant Recipient Research Reports
  • Alberta Prion Research Institute Report
  • National Prion Disease Pathology Surveillance Center Panel
  • Centers for Disease Control and Prevention Report
  • Moving Roundtables
  • Family Consultations (Optional)
  • Reception and Banquet

Sunday Sessions:

  • The CJD International Support Alliance
  • CJD Foundation Report
  • Grants Program Update
  • Grant Recipient Research Reports
  • Family Stories
  • Moving Roundtables
  • Advocacy Training (Optional)


Hotel reservations must be made separately with the Washington Court Hotel.

Call 202.628.2100 to reserve your room. 

Our special conference rates are available on a first-come, first-served basis. If you stay outside the hotel, you are still required to register for the conference.

Conference Sponsors

Platinum Sponsor

Ionis Pharmaceuticals

Saturday Breakfast

Lavonne, Amy, Skyler & Libby Hall

Lavonne, Amy, Skyler & Libby Hall

Sunday Breakfast

Hall Ambulance

Hall Ambulance

Conference Bags

Byron Jones and The Hunter Family

Byron Jones and The Hunter Family