Please see the Data Protection Policy which may supersede provisions contained below. For information on the privacy policy of Network for Good, which is a nonprofit company the Society uses for donation and other data services, please visit their privacy policy.

Our web site uses forms in which you give us contact information (including your name, address, daytime telephone number, and email address) so you can request information and support, and contribute to the future health of the organization. We will then create an account number for you and if you choose to order from us using a credit card, we will collect your credit card number and expiration date for that purchase only. All such information is encrypted and credit card information is not retained, kept or stored. We use your information only when it will be important for us to contact you regarding changes to our services, our web site, new products, and programs that we think you’ll find valuable. If you would rather not receive this information, please see the “Updating Your Information” section below. If we present a co-branded offer with development partners, it will be clear at the point of collection who is collecting the information and whose privacy statement applies.

On rare occasions, one of our partners may require us to share your personal information with them. We will only do so with your explicit permission first.

We use information gathered about you from our site statistics (for example your IP address) to help diagnose problems with our server, and to administer our web site. We also gather broad demographic information from this data to help us improve our site and make your membership experience more enjoyable. This is not linked to any personally identifiable information, except as necessary to prevent fraud or abuse on our system.

Our site uses cookies to keep track of who is using the different levels of functionality available to The Ehlers-Danlos Society members. We use cookies to identify you for your convenience.

This site also contains links to other sites. The Ehlers-Danlos Society is not responsible for the privacy practices or the content of such web sites.


This site has security measures in place to protect the loss, misuse and alteration of the information under our control. These include but are not limited to use of Transport Layer Security with a security certificate from Let’s Encrypt X3 and the use of 256-byte RSA Encryption.

Updating Your Information

As an The Ehlers-Danlos Society member, you may alter your customer information or opt-out of receiving communications from us and our partners at any time. We have the following options for changing and modifying your customer information.

  • You may contact us.
  • You may send mail to the Society at 1732 1st Ave. #20373, New York, NY 10128 USA or The Ehlers-Danlos Society – Europe, Office 7,35-37 Ludgate Hill, London, EC4M 7JN UK
  • You may call us at 1-410-670-7577

The information you send to us may be stored and used to improve this site and our products, or it may be reviewed and discarded. However, your information will only be shared with third parties with your explicit permission.

Only If We Have To

As stated previously in this policy, we will not share your personal information except with a third party to assist us in the processing or securing of your personal information or when we are required by law unless we have given you notice and choice, in the good-faith belief that such action is necessary in order to conform to the edicts of the law, or we must comply with a legal process served on our web site. We may also need to give out your information if one of our partners requires it, but these situations are extremely rare.

Changes in Our Practices

If we make material changes to our information handling practices or other privacy aspects, we will post those changes on this privacy statement, at least 30 days prior to their implementation or notify you directly via email. Minor changes will be immediately effective upon reposting to this privacy policy on the The Ehlers-Danlos Society web site.

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