CJD Foundation Mission Statement

Creutzfeldt-Jakob Disease (CJD) is a rare, rapidly progressive 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


The Foundation's philosophy is to be proactive by establishing collaborations and linkages, communicating with family members, researchers, physicians and political representatives and informing the broader community about CJD.


Our policy is to offer support, information and practical advice. We do not offer opinions or medical advice.


The CJD Foundation’s strong financial health and commitment to accountability and transparency have earned it a 4-star rating for four consecutive years from Charity Navigator, America’s largest independent charity evaluator. Only 21% of the charities evaluated by Charity Navigator have received at least 4 consecutive 4-star evaluations, indicating that CJD Foundation outperforms most other charities in America. This exceptional designation from Charity Navigator sets the CJD Foundation apart from its peers and demonstrates to the public its trustworthiness.

Privacy Policy

All information shared with the CJD Foundation is confidential and not used or shared without your written consent. For more detailed information, please view our privacy policy.