Creutzfeldt-Jakob Disease

Who to Contact
Where to Go to Chat with Others
Learn More About It
Web Sites
Search Google for "Creutzfeldt-Jakob Disease"

Who to Contact

Creutzfeldt-Jakob Disease Foundation, Inc.
P.O. Box 5312
Akron, Ohio 44334
800-659-1991 (toll-free)
330-665-5590 (phone)
330-668-2474 (fax)
Email: crjakob@aol.com
Website: http://www.cjdfoundation.org/

This foundation was created on April 7, 1993, by two families who had each lost a relative to CJD, and the neurologist who treated the CJD patients. It seeks to promote the research, education and awareness of CJD, as well as to reach out to people who have lost loved ones to this illness.   The Foundation provides emotional support to individuals and families dealing with CJD and other prion diseases as well as practical information to caregivers through our website www.cjdfoundation.org and the toll free national HelpLine.

Where to Go to Chat with Others

• CJD Voice
  This is a support and discussion group dealing with the topic of Creutzfeldt Jakob Disease. We help families cope with the daily care of a CJD patient as well as discuss issues surrounding this disease.

• CJD News
  News and medical journal articles and critical information published about Creutzfeldt Jakob Disease.

Learn More About It

• An overview of Creutzfeldt-Jakob Disease
  From the Creutzfeldt-Jakob Disease Foundation

• CJD Defined
  From the CJD Voice web site

• Creutzfeldt-Jakob Disease
  From the Centers for Disease Control and Prevention

Web Sites

• CJD Voice
  A grass roots organization of individuals formed to support families during and after a CJD crisis.

• Blood Recall/Withdrawal – Creutzfeldt-Jakob Disease
  Created to fill the needs of people who have received notices that the blood products that they, or their children, received, or that were used in the In Vitro Fertilization (IVF) cultures that produced their children, were recalled/withdrawn from the market because a member of the donor pool was diagnosed with Creutzfeldt-Jakob Disease (CJD) or was at risk for the disease.

• Creutzfeldt-Jakob Disease Foundation, Inc.
  

• Creutzfeldt-Jakob Disease Support Group Network, Inc. – Australia

• Creutzfeldt-Jakob Disease Surveillance Unit – United Kingdom

• The Many Faces of Creutzfeldt-Jakob Disease
  This website is a collection of personal stories that put a face on CJD.