Creutzfeldt-Jakob Disease is a rare, rapidly progessive neurodegenerative disease, one of several prion diseases caused by prion proteins that misfold in the brain. There is no treatment or cure and the disease is invariably fatal.
The mission of the Creutzfeldt-Jakob Disease Foundation is to support families affected by prion disease, raise awareness, and support medical education and research.
We carry out this mission through:
- Family support including a 7-day HelpLine, referrals, support groups, and teleconference speaker series
- Education and information for families, caregivers, medical professionals, and funeral professionals
- Advocacy with political representatives and public policy makers
- Annual Family Conference that brings together affected families and prion disease experts
- Family Workshops held around the country
- Collaboration with scientists, clinicians, medical centers, health authorities, professional organizations, and international patient associations
- Communication of current research and Foundation activities via newsletter, social media, emails, and family teleconferences
- Research grant program, with international awardees selected by our Scientific Advisory Committee