Share Your Story Form Consent

I consent to the National Foundation for Ectodermal Dysplasias using my story and photographs of me and/or my family and hereby irrevocably grant the National Foundation for Ectodermal Dysplasias the perpetual right to use his or her name and likeness as incorporated in any such photographs. I agree that National Foundation for Ectodermal Dysplasias shall own all right, title and interest to such photographs and that you may edit, modify, and distribute such photographs without limitation, and without compensation, further permission or notification from me. I hereby waive any inspection or approval of use. I also waive and release National Foundation for Ectodermal Dysplasias from any claims based upon invasion of privacy or right of publicity.

NFED Privacy Policy

Last Updated:  November 19, 2018

This Privacy Policy explains how the National Foundation for Ectodermal Dysplasias (“NFED,” “we,” or “us”) collects information about you and how we use and share your information when you access our websites.  The Privacy Policy also explains choices that can be made about the way information is collected and used.

What information about me is collected and stored?

In some instances you may provide information directly to us.  For example, you may provide information when you participate in any interactive features of the website, when registering for an event, buying a product, or seeking information.  The types of information we may collect include your name, email address, postal address, phone number, payment information, company information, and any other information you choose to provide.

In addition to the information that you provide, we also collect some information automatically, such as:

  • Log Information: When the site is visited, our server automatically records the your domain (service provider), page you visited before navigating to our website, 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 us is used for statistical purposes so that we can manage our site and better serve our visitors.
  • Information Collected by Cookies and Other Tracking Technologies: We use various technologies to collect information, and this may include sending cookies to your computer or mobile device.  “Cookies” are small pieces of information that are stored on your computer’s hard drive or in device memory that help us improve our websites and your experience, see which areas and features of our websites are popular, and count visits.   For more information about Cookies, and how to disable them, please see Your Choices section below.  We may also collect information using web beacons (also known as tracking pixels).  Web beacons are electronic images that may be used in our websites or emails to help deliver cookies, count visits, understand usage and campaign effectiveness and determine whether an email has been opened and acted upon.

How do we use the information we collect?

We may use for information for various purposes, including to:

  • Notify you of changes to the websites, new services or features offered by the NFED, and special offers or information;
  • Send information about services, and programs or events of the NFED;
  • Monitor and analyze trends, usage and activities in connection with our products and services;
  • Process and fulfill your orders for products and services and send information related to your orders; and
  • Respond to your comments, questions, and requests.

The NFED is based in the United States and the information we collect is governed by United States law.  By accessing or using the websites or otherwise providing information to us, you consent to the processing and transfer of information in and to the United States.

How do we share the information we collect?

We may share information about you as follows:

  • The NFED may at times, to the extent allowed by law, share your information with third parties (vendors, contractors, etc.) who perform services or marketing on our behalf. These entities have access to your information only to the extent needed to perform their functions;
  • If you provide information to us for the purpose of making it public (for example, on a mailing list, blog or forum we operate), we publish such information on our websites, and we cannot control what other parties may do with that information once it is public. Please be careful about what information you choose to disclose; and
  • With your consent or at your discretion, including if we notify you through our websites that the information you provide will be shared in a particular manner and you provide such information. 

Your Choices.

  • Promotional Communications. Our site provides users the opportunity to opt-out of receiving promotional communications from the NFED by following the instructions located within those email messages or sending an email to
  • Most web browsers automatically accept Cookies, but you can usually adjust a browser to prevent them. However, this could limit your ability to use certain features on our websites.

Changes to this Privacy Policy

We reserve the right to modify or amend the terms of this Privacy Policy from time to time.  If we make changes, we will notify you by revising the date at the top of this Privacy Policy and, in some cases, we may provide you with additional notice (such as by adding a statement to the homepage of our websites or by sending you an email notification).  We encourage you to review the Privacy Policy whenever you access our websites to stay informed about our information practices and the ways you can help protect your privacy.

Security of Personal Information

Users can email to request that their personal information not be shared outside of the NFED. Our website provides the following security. We (a) store transaction information on secure computers located in a physically secure data center; (b) employ technology that is consistent with industry standards for firewalls and other security technology to prevent Wired Impact computers from being accessed by unauthorized persons; (c) provide the following security measures: the ability to transfer files via secure FTP, and encrypted passwords for the hosting services; and (d) have their hosting partner monitor the data center where the website is hosted (24 hours per day; 7 days per week) for health and performance.

Who should I contact if I have questions?

Questions regarding this Privacy Policy or how to update your information should be directed to

Diversity Policy

Individuals serving on the Board of Directors, Scientific Advisory Council, Patient Care Council, Family Support Council, or employed by the NFED hold a shared belief and commitment to the mission of the organization. Each understands the importance and value of their time, talent and resources to the organization. In addition, the organization is respectful of and highly values its overall impact on American society and world cultures. As a result, we affirm our commitment to serving our diverse constituency appropriately by assuring that our Board of Directors, Family Support Council, Scientific Advisory Council, Patient Care Council, staff and programs reflect that diversity.