CJD Privacy Policy

The Creutzfeldt-Jakob Foundation (CJDF) has created this policy to demonstrate our commitment to privacy. The following statement explains our information-gathering and dissemination practices for our web site at www.cjdfoundation.org. This policy may change from time to time, so please check back periodically. Throughout this policy, "we," "us," and "our" will mean CJDF. This policy does not apply to the practices of persons or entities that the CJDF does not control, manage or employ.

The CJDF knows that you care how information about you is used. Please read the following to learn more about our privacy policy.

What information does CJDF collect from me as an end user?

You can browse our Site without telling us who you are or giving us any personally identifiable information about yourself. When you interact with us through your computer, our website does record certain non-identifying site usage data, such as the number of hits and visits to our Site.

CJDF provides information that may be relevant to individuals coping with a diagnosis of Creutzfeldt-Jakob Disease (CJD). The goal of this information is to educate patients, family members, caregivers and professionals about topics related to CJD in order to help them more effectively advocate for themselves and participate in making decisions with their health care team. The information on the Site is not intended to substitute for information provided by healthcare professionals.

We are compiling patient information through a brief questionnaire.  We are at presentthe only repository in the U.S. for anecdotal information regarding CJD patients.  We hope you will help us by providing information about your loved one.  If you agree, you will be asked to provide among other things, the patient’s name, address, age, gender, date of birth, symptoms, progression of the illness and diagnostic testing along with other healthcare information (collectively referred to as "Profile Information"). Once you provide us with this information you are no longer anonymous to us. We also collect personally identifiable data, such as your username, address, phone number and e-mail address which is used only to provide you with support and information about the work of the CJDF.

Does CJDF track my IP address?

When you visit the Site, our web servers automatically collect limited information about your computer's connection to the Internet, including your IP address (which is a number that lets computers attached to the Internet know where to send you data). Your IP address does not identify you personally. We log your IP address to (i) deliver our web pages to you upon request;(ii) tailor our Sites to the interests of our users; (iii) help diagnose problems with our server;(iv) administer our Site in order to constantly improve the quality of the Site; (v) measure traffic within our Site; and (vi) prevent fraudulent use of the Sites by others. CJDF may also track what we call a Customer Identification Number ("CID"), located within our URL, to determine the web site from which you navigated to get to this Site. This CID number does not contain personal information, and the CID number may not be apparent to you. We may also track and analyze non-identifying, aggregate usage and volume statistical information from our visitors and users and may provide such information to third parties.

How does CJDF use my information?

CJDF does not sell, share or disclose personal information with persons or entities not affiliated with or employed by CJDF except with your consent or when we reasonably determine it is necessary to do so in order to comply with the law or protect the safety, property or legal rights of CJDF or others.

CJDF has contractual arrangements with certain partners to provide information and services through the Site. Each of these partners may set and access "cookies" on your computer through the Site. The use of such "cookies" by each of these partners is subject to their own privacy policy, not the privacy policy of CJDF. We believe these partners share a similar commitment to privacy and urge you to review their privacy policies when visiting their sites. However, we cannot be responsible for their privacy policies.

When you create a profile with the CJDF, we will use that to provide you with information that is of the most interest to you. Such Profile Information is also compiled and analyzed on an aggregated basis that does not reveal your personal identity ("Aggregated Data"). We may share this Aggregated Data with the CDC, The National Prion Disease Pathology Surveillance Center, or other third parties to advance goals of research, education, dissemination of information, and the provision of services and support for the treatment of patients with CJD. In addition, you may from time to time be provided with or given the opportunity to obtain additional information of interest, updates, surveys, bulletins or other communications from CJDF via e-mail. You may select to opt out of future Communications by following the opt-out provision below.

How does CJDF protect my Information?

CJDF and/or its subcontractors institute various electronic and administrative safe guards to protect your information from unauthorized access, including firewall technologies to help protect your data from hackers and other unwanted visitors Despite use of these, there are inherent risks in transmission of electronic information. We cannot guarantee and do not represent that your information will always be secure from unauthorized access.

All credit card information given to the CJDF for donation or purchasing purposes is destroyed immediately after the transaction.  There is no permanent file of this information in the CJDF office.
We also may use a managed hosting provider and/or other subcontractors to assist us with the provision and maintenance of the Sites. If we do, we will impose on such provider confidentiality obligations for the treatment of information.

Can I opt-out of receiving Communications?

To remove your information from our database so that you do not receive further Communications, you can email us this request at help@cjdfoundation.org or call us with the request at 1-800-659-1991.

How can I correct and/or update my data?

You may update and/or correct your Profile Information at any time by emailing the CJDF or calling the HelpLine at 1-800-659-1991.

What about the privacy policies of sites linking to the Site or to which the Site link?

We provide links on our Site to other web sites provided by third parties. In addition, some users access our Site via another site or a link on another site. We have no control over the sites that link to our Site or to which our Site links. We are not responsible for the privacy practices or the content of any site other than our Site. The existence of a link between our Site and other third party sites does not imply an endorsement of these other sites. We are not responsible for the content of such other site, nor for the treatment of personal information you might provide while visiting such other sites.

What constitutes my acceptance of this privacy policy?

By using the Site, you expressly consent to the use and disclosure of information as described in this Privacy Policy. Your continued use of the Site after the effective date of any modification to the Privacy Policy will be deemed to be your agreement to the changed terms. You agree to review the Privacy Policy each time you use the Site so that you are aware of such modifications.
Notice to Parents Regarding Participation of Children and Teens.

We want to help you guard your children's privacy. In order to comply with the Children's Online Privacy Protection Act, CJDF will not knowingly accept "personal information" from children under the age of thirteen (13). Our refusal to accept this information does not preclude minors, however, from visiting and using certain features of the Site.

Disclaimer on Information and Advice

The goal of the Site is to provide information to patients with CJD, their families, caregivers, and professionals in an effort to educate them and enable them to more effectively advocate for themselves and participate in making decisions. It is not intended nor should it be construed as providing professional medical, financial or legal advice. The Site and the information contained on the Site is not a replacement for obtaining professional medical care or professional legal and financial advice. You should consult a trained medical professional for consultation, diagnosis and treatment of CJD and any topic covered on the Site. You should consult a trained legal or financial professional for any document covering these topics.

The Site is intended for personal use by individuals coping with CJD, those supporting friends and loved ones with CJD, and those interested in learning more about topics related to Creutzfeldt-Jakob Disease. You agree not to provide any personal information of any third party or to create profiles on behalf of any other person unless you are the parent or legal guardian of a child and you create a profile for your child.

How do I contact CJDF?

If you suspect that this privacy policy has been violated, or if you have any questions about this policy, the practices of the Sites, or your dealings with the Sites, you may contact us in the following ways:

By email: help@cjdfoundation.org
By conventional mail:
The CJD Foundation
P.O. Box 5312
Akron, Ohio 44334
By telephone:800-659-1991