View CJD Foundation Literature here.
View CJD Foundation Videos here.

Teleneurology Assessment Program

If your loved one has just been diagnosed -- or is in the process of being diagnosed -- and you would like information about a study on diagnosing prion disease, contact the CJD Foundation Helpline at 1-800-659-1991 or

The following links also may be helpful to you:

National Prion Disease Pathology Surveillance Center
Dr. Brian Appleby
Director, Institute of Pathology, Case Western Reserve University
2085 Adelbert Rd.
Cleveland, Ohio 44106

Case Western Reserve University
Dr. Brian Appleby, Staff Neurologist, University Hospitals - Case Medical Center
University Foley Elderhealth Center
3619 Park East Drive, Suite 211
Beachwood, OH 44122
216-464-6403 (Fax)

UCSF Clinical Study
Dr. Michael Geschwind
Memory and Aging Center
675 Nelson Rising Lane, Suite 190
San Francisco, CA 94158
415-476-2901 or 415-476-8791
415-502-7601 (Fax)

Centers for Disease Control and Prevention (CDC)
1600 Clifton Road
Atlanta, Georgia
1-800-311-3456 or 404-639-3396

National Organization for Rare Diseases (NORD)
P.O. Box 8923
New Fairfield, CT 06812-8923
203-746-6518 or 1-800-NORD (6673)
203-746-6481 (fax)

National Institute of Neurological Disorders and Stroke (NINDS)
National Institutes of Health
31 Center Drive MSC 2540
Bethesda, MD 20892-2540
301-496-5751 or 1-800-352-9424

Food and Drug Administration (FDA)
5600 Fishers Lane
Rockville, MD 20857

United States Department of Agriculture Food Safety and Inspection Services (FSIS)
Infoline: 1-800.5354555
Information on food safety, meat and related products, and meat inspection

United States Department of Agriculture Animal and Plant Health Inspection Service (APHIS)
609-259-5825 or 301-734-7799
Information on animal health and BSE

Consumer Federation of America
1424 16th St., NW, Suite 604
Washington, D.C. 20036

CJD International Support Alliance

CJD Support Group Network (Australia)
Suzanne Solvyns
+ 61 298998905

The CJD Foundation, Mexico
Dr. Victor Sanchez
Sierra Mojado 800
Guadalajara, Jalisco, Mexico 443430

CJD Support Network (UK)
Gillian Turner
+44 (0)1630 673973

CJD Insight, Information & Support
Organized for Familial CJD
Deana Simpson, RN, Founder & Director

A.I.En.P. ONLUS (Italy)
Associazione Italiana Encefalopatie da Prioni ONLUS
Roberto Borgis
+ 39 348 88 11 514

CJD Support Network (Japan)
Muneto Ueda

CJD Foundation (Israel)
Alice Anane

MCJ-HCC (Maladie de Creutzfeldt-Jakob par Hormone de Croissance Contaminée) (France)
JB Mathieu, President
+ 33 0820 825303 or

The CJK Initiative, Germany
Jens Backer, President
Gottengen, Germany

Recommended Reading List

"Mercies in Disguise: A Story of Hope, a Family's Genetic Destiny, and the Science That Rescued Them" by Gina Kolata

"The Family that Couldn’t Sleep" by DT Max

"Diagnostic and Prognostic Value of Human Prion Detection in Cerebrospinal Fluid," Aaron Foutz, MSc; Brian S. Appleby, MD; Clive Hamlin, PhD; Xiaoqin Liu, BSc; Sheng Yang, MSc; Yvonne Cohen, BSc; Wei Chen, BSc; Janis Blevins, BSc; Cameron Fausett, MSc; Han Wang, MD, MPH; Pierluigi Gambetti, MD; Shulin Zhang, MD; Andrew Hughson, MSc; Curtis Tatsuoka, PhD; Lawrence B. Schonberger, MD, MPH; Mark L. Cohen, MD; Byron Caughey, PhD; and Jiri G. Safar, MD