Privacy Policy

This privacy policy is used by the Edwards’ Syndrome Association which is dedicated to preserving the privacy and personal information of visitors. 

This website is operated by The Edwards’ Syndrome Association (“The ESA”). The purpose of The ESA is to provide users with resources and information about Edwards’ Syndrome. The ESA takes preserving the privacy of the personal data of visitors seriously. This policy informs you of the information gathered about you through the website, social media pages, mobile sites, or any other promotional material created by The ESA.  The ESA does work with third parties and users will have to visit the third party’s privacy policy to understand how they collect and protect data. If you choose to opt-in for future updates your information will be kept in a secure database. This will allow The ESA to be able to alert you to news and updates if you choose to fill out a questionnaire or form from the website, through a social media page, or to contact The ESA by any other means that information will be kept in a secure database and utilized on the website, social media, or other promotional materials. Personal information such as email addresses or phone numbers will only be stored so The ESA can contact you about the information you supplied, or if you agree via a form or questionnaire for another individual in the Edwards’ Syndrome community to reach out to you directly. By using The ESA platforms and website, you consent to the use and disclosure of information. As a further explanation of this privacy statement, The ESA has prepared this disclosure regarding The ESA’s privacy practices.

If you feel that The ESA is not abiding by this privacy policy, please contact The ESA immediately at


Collecting Information

The ESA may collect information in various ways by a user on this site. The ESA also may collect information from forms, questionnaires, or contact buttons that you voluntarily submit. The ESA also may collect information from correspondence you may have via email, letters, or other communication means on social media. Two types of information may be collected: personally identifiable (information that identifies you or that can be used to contact you) and non-personally identifiable (gender, diagnosis, age, etc.). The ESA will utilize the information that you provide to assist with services or to build resources. The ESA may also share information you provide with third parties that share similar missions that The ESA partners with. The ESA may also share personal information with another in the Edwards’ Syndrome community if you agree to this via a form or questionnaire. 



If you submit a media file such as a picture or a video you are acknowledging that this media will be publicly accessible on the website, social media, promotional materials, or other platforms. 


Cookies & Analytics

Cookies are bits of information that contain a specific identifier for a user and website. These cookies allow websites to gear the page’s content to a particular user based on data that was retrieved from a prior website visit. While the Edwards’ Syndrome Association does not collect data via cookies, some first and third-party add-ins that are present on The ESA platforms do collect cookies to provide website access and usage analytics for search engine purposes. You are agreeing to the use of these cookies by visiting Edwards’ Syndrome Association platforms. 


Retaining Data

The ESA will retain your personal data as outlined in this privacy policy for as long as it is applicable to The ESA mission. If you wish to have your personal data and information removed from The ESA database that you have submitted through the website, social media, forms, questionnaires, or other programming you can contact The ESA at and The ESA will work with you to correct or delete any personal data that you have provided.



The ESA is not responsible for the privacy practices of third-party sites that are linked through The ESA website or shared on social media or other platforms. If users access a link from The ESA site or another platform you should review the privacy policies of the website. 



If you choose to opt-in for The ESA updates, your information will be kept in a secure database in order to alert you of news and happenings. If you wish to be removed from the alerts, or any other communications or programming, reach out to and title the correspondence “Opt-out”.  


Policy Changes

The ESA can amend this privacy policy at any time. This policy will remain up to date on the website and it is suggested that you periodically check this Privacy Policy. 


Updated 8-15-2023