Who We Are and Why We Exist
The Creutzfeldt-Jakob Disease Foundation consists of members who are concerned about the complexity of issues surrounding this fatal brain disease. Our mission is to support families and loved ones touched by CJD.
We carry out this mission by means of:
- Publication of CJD Information pamphlet, September 2003
- Political and public policy advocacy
- A Family Conference
- Collaboration with the National Prion Disease Pathology Surveillance Center and the Centers for Disease Control and Prevention
- Monitoring and communicating by newsletter all of the current research and Foundation activities
- Collaboration with international support groups involved in similar work including:
- The CJD Support Network, U.K.
- The Human BSE Foundation, U.K.
- The CJD Support Network, Japan
- The Fatal Familial Incomnia Foundation, Italy
- The Human Growth Horomone Foundation, Australia
- Collaboration with Dr. Pierluigi Gambetti, director of the NPDPSC, the CDC and Dr. Nick Baird, director of the Ohio State Department of Health, we are developing a template in the state of Ohio to increase physician awareness and reporting of CJD. When this has been successfully implemented, we will work with the Health Departments of the other states to duplicate this program.
- Our website www.cjdfoundation.org
Philosophy
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.
Policy
Our policy is to offer support, information and practical advice. We do not offer opinions or medical advice.
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.
