National Foundation for Ectodermal Dysplasias

Our mission is to empower and connect people touched by
ectodermal dysplasias through education, support, and research.

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Privacy Policy

Privacy is important to us. The following explains our online information practices and the choices that can be made about the way information is collected and used.

When a transaction is made (registering for an event, buying a product, or seeking information), we may need to know specific information in order to process the request. We may use the information we collect to make notifications of important changes to the site, new services or features offered by the NFED, and special offers or information we think is valuable to our constituents.  If such information is unwanted, the NFED provides for an “opt-out” choice.  Participants may contact the NFED (by e-mail, mail, phone or fax) regarding questions relating to our privacy policy and practices – or a wish to review or correct any personal information the NFED may have on file.

Our site's forms may require information (such as a name, e-mail and address). We may use the contact information from these registration and survey forms to send information about other programs or events of the NFED. Our site provides users the opportunity to opt-out of receiving communications from the NFED. To make such a request, please send an email to Typically the request will be fulfilled within five business days. 

When an order for products or services is made from our site, we must have a name, e-mail address, mailing address, credit card number, and expiration date. This allows us to process and fulfill an order and to make notifications of the order status. When users are asked to provide personal, private and/or financial information (such as a credit card number), we use state-of-the-art security to safeguard their data. The secure server software, SSL (secure sockets layer), encrypts or encodes all information that is entered before it is sent to us. Furthermore, all of the customer transactional data we collect is protected against unauthorized access with the use of digital certificates. Digital certificates for the NFED are issued by, a trusted provider. To learn more about our online security, simply click the "security" icon (usually a padlock) at the bottom of the users browser window.

We may use the information we collect to make notifications of important changes to the site, new services or features offered by the NFED, and special offers or information we think is valuable. If such information is unwanted, please contact us through one of the channels identified in the choice/opt-out section.

We also collect anonymous, non-identifiable information about visitors. When the site is visited, our server automatically records the visitor’s domain (service provider), operating system and Web browser type/version as well as the time and date of the visit to a particular page. The information automatically recorded by our server is used only for statistical purposes so that we can manage our site and better serve our visitors. Our server does not and cannot record identifiable information such as a specific e-mail address.

"Cookies" are small pieces of information that are stored by the visitor’s browser on their computer's hard drive. Our cookies do not contain any personally identifying information. Most web browsers automatically accept cookies, but visitors can usually adjust a browser to prevent them. However, this could limit the visitor’s ability to use certain features on our site.  Our site uses cookies to uniquely identify users' machines so that we can monitor site usage, traffic and trends.

The NFED does not sell, trade, or rent your personal information to others. It may at times, to the extent allowed by law, share member/user information with reputable third parties (vendors, contractors, etc.) who perform services or marketing on our behalf. 

Site Copyright 2010 by National Foundation for Ectodermal Dysplasias. All Rights Reserved. St. Louis web design by Insite Advice.
The National Foundation for Ectodermal Dysplasias (NFED) is a qualified 501(c)(3) nonprofit organization.
The EIN is 37-1112496. The NFED is registered in all states where applicable.
6 Executive Dr., Ste. 2, Fairview Heights, IL 62208-1360