TOLL-FREE HELPLINE: 1-800-659-1991
Our HelpLine is open Monday through Friday from 9 a.m. to 5 p.m. Eastern Time. We are available to answer questions, offer support and help you manage when you're caring for a loved one with a suspected or confirmed CJD diagnosis. Please ask for Debbie or Lori.
Calls regarding patients will be returned evenings and weekends until 9:00 p.m. Eastern Time. Calls requesting general information will be returned the next business day.
Please call us to report your loved one's diagnosis, whether suspected or confirmed. One very important goal of the CJD Foundation is to collect confidential anecdotal information to be used to help with surveillance of prion diseases in the United States. We look for changes in the number of cases, geographical locations and other areas of concern. All information is confidential and NEVER shared without your written permission.
When you call, we will need the following information:
- The name of the patient
- Patient's age
- The patient's location, city and state
- How was the diagnosis made?
- Would you recommend the physician or physicians to other families?
- Progression of the illness
- Your name and contact information (If you do not wish to receive any contact from us, we will note that on the file.)
- Any problems or frustrations you may have experienced with the professionals caring for your loved one or in general.
There are many questions about the accuracy of the statistics which state that there is one CJD case per million per population. According to the numbers reported to the Centers for Disease Control and Prevention (CDC), this appears accurate but there are still states where cases of CJD are not reportable or situations where patients go undiagnosed or misdiagnosed. The CDC only counts a case when the death certificate lists Creutzfeldt-Jakob Disease as the primary cause of death.
The National Prion Disease Pathology Surveillance Center (NPDPSC) also helps the CDC track the number of cases of CJD in the United States. The NPDPSC only includes those cases which have positive autopsy results. If there was no autopsy or brain biopsy, the case is not included in these statistics.
Please help us gather accurate information about this rare disease. Each year, we ask Congress to continue its allocation for prion disease research, and your information helps us build the case for continued financial support for research and surveillance. Your information insures that your loved one is included.
Finally, we at the Foundation have seen and felt the pain and suffering caused by CJD. We are a reliable source of valuable information that may be helpful to you and your family. Feel free to use these helpful resources below for more information: