Privacy Policy

/Privacy Policy
Privacy Policy 2018-05-21T16:06:38+00:00

NFXF Privacy Policy

The National Fragile X Foundation (NFXF) is committed to respecting the privacy of our website visitors.  This page describes our privacy policy regarding the information we collect from you during your visit to our site, how we may use it, and how we will protect the information which you choose to provide us.

Personally Identifiable Information

NFXF does not require that you provide personally identifiable information in order to use our website.  Personally identifiable information includes your name, address, zip code and telephone number, e-mail address and any other information which might be used to identify you individually. You may provide personally identifiable information to us while using the site in four situations: (1) while making a donation, (2) when ordering from our online store, (3) while signing up for future communications, and/or (4) while communicating with the foundation. If you decide to support the activities of NFXF by making a tax-deductible contribution with a credit card, we will collect the information needed to complete the transaction. If you order materials from our online store, we will collect the information needed to complete the transaction. If you signup to receive future communications, we will retain the information you provide. If you contact NFXF, we will collect the information necessary to respond to you and also will receive any information you disclose in your message.  In every case, we will take reasonable precautions to prevent your personal information from being intercepted by any third party using standard web techniques including encryption and firewalls to protect the data.  In these cases, when NFXF receives personally identifiable information, we may use it for reasonable purposes. For example, we may use this information to contact you to provide you with information we believe may be of interest, including through online ads. It may also be used for compiling data and analyses to understand and serve your needs.  Data is also compiled to evaluate how well we are doing at accomplishing our mission.

Personally identifiable information will never be sold, rented, or exchanged outside of NFXF, its successors or assigns, and its vendors bound by non-disclosure agreements unless the user is first notified and expressly consents to such transfer.

Use of Cookies

We use “cookies” on this site. A cookie is a piece of data stored on a site visitor’s hard drive to help us improve your access to our site and identify repeat visitors to our site. For instance, when we use a cookie to identify you, you would not have to log in a password more than once, thereby saving time while on our site. Cookies can also enable us to track and target the interests of our users to enhance the experience on our site. Cookies do not store any personally identifiable information on our site. 

Links To Other Sites

As a resource to our visitors NFXF may provide links to other websites and links to other sites may be posted in the forums. Links posted in the forums are generally not screened and any link posted in the forum is followed at your own risk.  For links posted outside the forum, we try to carefully choose websites which we believe are useful and meet our high standards for the accuracy and utility of information. However, because website design and content can change so quickly we cannot guarantee the standards of every website to which we link. Likewise, we are not responsible for the content of any non-NFXF site. We also cannot guarantee the privacy policies of these other sites and suggest you check the privacy policies of those sites directly.

Non-NFXF Products and Resources

Any reference to a commercial or noncommercial product, process, service or company is not an endorsement or recommendation by the National Fragile X Foundation.

The National Fragile X Foundation does not endorse or recommend products, services, or manufacturers. The National Fragile X Foundation assumes no liability whatsoever for the use or contents of any product or service mentioned.

Communications from NFXF

If you wish to stop receiving any e-mail or other communications from NFXF or if you have submitted personally identifiable information through a NFXF website and would like to have that information deleted, please notify us and it will be done promptly.  Click on the “contact us” link in the navigation bar to contact NFXF.

Surveys & Contests
From time-to-time our site requests information via surveys. Participation in these surveys or contests is completely voluntary and you may choose whether or not to participate and therefore disclose this information. Information requested may include contact information (such as name and address), and demographic information (such as zip code, age, etc.). Survey information will be used for purposes of providing and improving services offered by the NFXF.


NFXF takes data security seriously.  Information collected by us stored behind a firewall and protected using secure encryption technologies.  While no security steps can offer 100 percent protection, we utilize state-of-the-art, industry-standard protocols to prevent unauthorized access to the information we hold. We will limit access to personal information to those NFXF personnel with a need to know it. We educate our staff about their duty to protect your privacy and provide training regarding the policy described herein.


NFXF reserves the right to make changes to this policy without notice.  Any changes to this privacy policy will be reflected in changes on this page. Please check this privacy page periodically to review any changes that may have been made.

Contact Us

If you have specific questions or concerns about the Foundation’s privacy policy, please contact us at the following address:

1821 International Drive, Suite 200

McLean, VA 22102
Toll-free Helpline: 1-800-688-8765
E-mail inquiries: contact@fragilex.or