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Privacy Policy


This Privacy Policy applies to your use of the Ectodermal Dysplasias International Registry, all its sub-domains and all associated services including, but not limited to, e-mail received from the Ectodermal Dysplasias International Registry, any of our computer systems, databases or networks connected to the Ectodermal Dysplasias International Registry and all its sub-domains and content embedded on other websites (collectively, the "Website").

We are committed to protecting the privacy and security of your visits to the Website. This is our online Privacy Policy. If you have questions about this Privacy Policy, please let us know. If you do not agree with this Privacy Policy, please do not access or use the Website.

We reserve the right to modify this Privacy Policy at any time by posting such change here. We encourage you to refer back to this page and review this Privacy Policy often for the latest information and the effective date of any modifications. If we decide to change this Privacy Policy, we will post a new policy on the Website and change the revision number and effective date at the bottom. Changes to this Privacy Policy will not apply retroactively. Your continued use of the Website after any such modifications are made constitutes your acknowledgement of, and agreement with, the Privacy Policy, as modified.

Collection of Information

To register you as a user of, and to authorize you to access, the Website, we collect some information that can be directly associated you and any person you are creating a profile for. We call this "Personal Information" and it includes among other things  name and address, title and email address and the name of the company or research institution, if any,  with which you are affiliated. You may modify your Personal Information at any time after logging into the Website by accessing your user profile from the User Menu.

Opting Out

By registering as a user of the Website, you have granted us permission to use your Personal Information to send you emails ("opt-in"). If you have received an email from us, our records indicate that you are a registered user of the Website. Because we respect your time and attention, we make every effort to control the frequency of our emails.

You may revoke the permission you have given us to use your Personal Information to send you emails ("opt-out") by following the opt-out links at the end of any email we send you. Please note that if you elect to unsubscribe to emails sent by us, your account to use the Website will also be terminated.

If you believe you have received unwanted, unsolicited email from us sent via the Website or purporting to be sent via the Website, please forward a copy of that email to the service provider.

Privacy and Sharing of Your Personal Information

It is our general policy not to make Personal Information available to anyone other than our employees. We will never share, sell or rent Personal Information with anyone without your advance permission or unless ordered by a court of law.

Personal Information will only be made available to employees managing this information for purposes of contacting you or sending you emails based on your request for information.


We maintain a variety of physical, electronic and procedural safeguards to protect your Personal Information. As mentioned above, it is our general policy to restrict access to Personal Information to our employees.

The Website may have links to other, outside websites that we do not control. You should know that we have no control over the content, privacy policies or security of any of these websites you elect to visit or interact with. Furthermore, we are not responsible for the content, privacy policies or security of any of these websites you elect to visit or interact with and you should check those policies on such websites.

Browser Information Collected on the Website

We log IP addresses, which are the locations of computers or networks on the Internet, and analyze them in order to improve the utility of the Website. We also collect aggregate numbers of page hits in order to track the popularity of certain pages and improve the utility of the Website. We do not gather, request, record, require, collect or track any users' Personal Information through these processes.
We use cookies on the Website. A "cookie" is a tiny text file that we store on your computer to customize your experience and support some necessary functions. We also use cookies to better understand how users use the Website. Our cookies contain no Personal Information and are neither shared nor revealed to other websites. We do not look for or at other websites' cookies on your computer.
You also have choices with respect to cookies. By modifying your browser preferences, you can. among other options, accept all cookies, be notified when a cookie is set, or reject all cookies (for more information on how to block or filter cookies, see However, if you reject some or all cookies, your experience at the Website may not be complete.

Use of Web Beacons

When we send emails to users of the Website, we may include a web beacon to allow us to determine the number of users who open our emails. When you click on a link in an email we have sent to you, we may record this individual response to allow us to customize our offerings to you. Web beacons collect only limited information, such as a cookie identifier, time and date of a page being viewed, and a description of the page on which the Web Beacon resides (the URL).
Web Beacons can be refused when delivered via email. If you do not wish to receive Web Beacons via email, you will need to disable HTML images or refuse HTML (select Text only) emails via your email software.