Internet Privacy Policy

Our Commitment to Privacy

The Center for Ehlers Danlos Syndrome Alliance Inc. (CEDSA) respects the privacy of every individual who visits (website) or other sites in the control of CEDSA. This notice explains our online information practices. Because your privacy is important to us, we provide you with notice and choices about the collection and use of your information. To make this notice easy to find, links are provided at the bottom of our homepage and on every page within our website. Additionally, each page that requests personally identifiable information reminds you of the importance of your privacy and provides a link to the privacy policy. By visiting CEDSA at, you accept the practices described in this Privacy Notice.

Use of Cookies

We use cookies, small files that are sent to your web browser and stored on your computer's hard drive, to improve your website experience. The cookie is used to speed up your access to the website and the information you wish to see, but it does not contain any personal information. The majority of web browsers accept cookies, but the “help” menu on your browser should give you options for preventing, accepting, or receiving notice of new cookies. However, please be aware that if you block cookies, some website functionality may be lost.

Data Collection

We collect two types of information:

Standard Web Server Traffic Pattern Information

General traffic, site usage, browser information and length of stay information is collected and stored in log files. This type of information is shared externally only on an aggregated basis.

Personal Information

We do not collect personally identifiable information from you unless you provide it to us voluntarily and knowingly. If you personalize our website, volunteer, order a book, request information, or donate, for example, we may collect the following information: first and last name, street address, city, state, zip code, telephone number, email address, and subject of inquiry.

Personal information may be needed for certain optional online activities:


If you choose to customize the website to your needs by becoming a registered web user, we retain the preferences you select, so you will not have to reenter the information each time you access our website. These preferences may include requests for emails, news, information on specific EDS types, language preferences, and interest group selections (patient, medical professional, volunteer). You can access your profile by entering your user name and password each time you use the website. You are not required, however, to enter your name or mailing address. This currently is for the forums and blogs sections of our website.

If you register to participate in a CEDSA event, such as “Empowering you to thrive with EDS.” or others, using our event registration site, we may ask you if you have EDS. This information is useful for event purposes. Further, if you elect to use our referral service to inform a friend about the event registration site, we will ask you for your friend’s name and address. We will store this information in order to send your friend a one-time email inviting him or her to visit the site.

Online orders

If you choose to order online, we collect standard credit card information (card number, card type, security code, expiration date) and keep a record of your financial transaction. Credit card numbers are held only until the charge can be processed (usually several minutes), then the number is only available to Customer Service for purposes of problem resolution.


If you choose to donate to our organization, we maintain a record of your contribution. Your financial information will be treated as described above in “Online orders.”


If you submit an online request for CEDSA products such as free brochures, or submit a question through a “contact us” query, we may have to gather additional information from you to respond to your request. Such information will vary with the request, but often includes name, shipping address, telephone number, and email address.


If you choose to participate in a chat room, discussion board, news group, or another public/private forum that we make available to our users, please remember that any information that you disclose in these areas become public information. You should exercise caution when deciding whether or not to disclose your personal information.

Data Use

We limit the use of information provided to us on our website to the following:

Internal Use

If you do not make a service request, donation, purchase, or otherwise identify yourself, we will have no personally identifiable information about you. We will only use aggregate information derived, in part, from your use of our site to improve our site and our service to you.

  • If you provide personal information, we may enter your name into our constituent database and contact you in order to:
  • Complete voluntary surveys seeking feedback for quality and service improvement purposes.
  • Supply you with information including EDS related health news, CEDSA programs, events and services. Request your participation in a CEDSA research study or survey.

We collect the email addresses of those who communicate with us by email. Inquiries may be forwarded to the appropriate CEDSA department for response and may be entered into our constituent database. If your name is entered into the database, we may contact you.

External Use

Your health-related information is privileged and confidential and will not be shared or released to any organization or business entity other than those affiliated with or working in conjunction with CEDSA. We never release any of your information without an email being sent to you from CEDSA letting you to opt-out before releasing your information.

Your Options

We respect your privacy and allow you to restrict internal and external sharing of your personal information. We recognize that you may wish to limit the ways in which we contact you and we offer the following options:

  • Do not contact me by telephone.
  • Do not contact me by postal mail.
  • Do not contact me by email.
  • Do not share my contact information with other non-profit organizations.
  • Do not contact me with fundraising requests supporting the Center for Ehlers Danlos Syndrome Alliance.
  • Limit your fundraising appeals to semiannual solicitations only.
  • Do not contact me or share my information with anyone.

For more information on how to inform us of any desired restrictions, please send an email to: This email address is being protected from spambots. You need JavaScript enabled to view it. and in the subject line please put “opt out”. If you contact us with an opt-out request, all reasonable efforts will be taken to ensure that you will not receive any of the selectedcommunications from us in the future. If you do not wish to opt out at this time, you may do so at a later date should you so desire.

If you opt back into a specific service, you will receive communication in that manner, regardless of your overall opt out selections.


Upon request, we will provide you with the information we maintain about you so that you may request corrections. This information will be sent via postal mail, which we believe is the most secure method of communication. Please contact us by email at This email address is being protected from spambots. You need JavaScript enabled to view it.or in writing at:

Center for Ehlers Danlos Syndrome Alliance
C/O Privacy Requests and Compliance
4805 Hospital Dr.
Cass City, MI 48726

To protect your privacy and security, we will take reasonable steps to verify your identity before providing information or making corrections.

Data Security

We are committed to protecting the security of your personal information and in honoring your choices for its intended use. To prevent unauthorized access, maintain data accuracy, and ensure the correct use of information, we strive to maintain physical, electronic, and administrative safeguards.

We will process your financial transactions securely using the Payment Card Industry Data Security Standard ("PCI DSS") (the credit card industry's most stringent security standard). Examples of our security measures include: physical, electronic, and procedural safeguards; sophisticated security monitoring tools; documented security policies; use of strong encryption (e.g., SSL) for transmissions of Order Information to and from our credit card processor; restricted access of personally identifiable information; and, periodic security audits.

Inside CEDSA, data is stored on password-controlled storage drives. Our staff and volunteers are educated about the importance of safeguarding your information, and we are committed to holding them accountable for protecting your confidentiality. However, such precautions do not guarantee that our website is invulnerable to all security breaks. CEDSA makes no warranty, guarantee, or representation that the use of our website is protected from viruses, security threats, or other vulnerabilities and that your information will always be secure.

Whenever CEDSA permits an external third party to access personally-identifiable information, appropriate procedures are followed to help ensure that the information is used only for authorized purposes and by authorized persons in a manner consistent with the choices CEDSA constituents have made under this statement, and that the security, integrity and privacy of the information is maintained. While CEDSA will employ procedures to help ensure that your information is only used for authorized purposes as described above, we cannot make any guarantees with respect to the actions or policies of such third parties.

Links within our website

Internal Links

Because of the various programs and services at CEDSA, there are several privacy notices to inform our constituents of policies specific to the activity in which they are participating.

External Links

Our privacy policies apply only to your use of the CEDSA website. This site contains links to other sites, including sites that have a special relationship with us. We do not disclose personably identifiable information to those operating linked sites and we are not responsible for their privacy practices. Links to other sites do not imply an endorsement of the materials or policies on those websites. You should read the privacy policies of each site you visit to determine what information that site may be collecting about you.

Contact Us

This privacy statement will be updated periodically and posted on our website. It applies only to our online practices and does not encompass other areas of the organization. Please click on one of the links provided under Internal Links to read other CEDSA privacy statements. It applies to the online practices of CEDSA and its chartered divisions located throughout the country and internationally. References to "Center for Ehlers Danlos Syndrome Alliance", "CEDSA", "we", "us", and "our" are references to Center for Ehlers Danlos Syndrome Alliance Inc. and its affiliates, staff and volunteers. We reserve the right to change this policy at any time by posting revisions. You agree to review the Privacy Policies each time you use our website so that you are aware of any modifications. By accessing or using the website, you agree to be bound by all of the terms and conditions of CEDSA’s Privacy Policy as posted at the time of your access or use. If you have any questions about our policy or our compliance, you may send us an email at This email address is being protected from spambots. You need JavaScript enabled to view it. or write to:

Center for Ehlers Danlos Syndrome Alliance
C/O Privacy Requests and Compliance
4805 Hospital Dr.
Cass City, MI 48726

Policy Updates

We reserve the right to update this policy at any time. If a material change is made to the policy, we will email all registered users at the email address provided at time of registration.

Effective date 6/1/2012