Donor Privacy Policy

/Donor Privacy Policy
Donor Privacy Policy 2019-05-17T17:43:56+00:00

Donor Privacy Policy

Last Reviewed: May 17, 2019
Please note that we also have a separate general privacy policy.

We Are Committed to Our Donors

We will not sell, share, or trade our donors’ names or personal information with any other entity, nor send mailings to our donors who have not subscribed to our emails on behalf of other organizations.

This policy applies to all information received online and offline by the National Fragile X Foundation, including the NFXF website (https://fragilex.org), and any written, electronic, or oral communications.

Any donor information processed through a third-party provider will be used only for the purpose of processing of the donation.

Donors and Email Subscriptions

Donors may also concurrently subscribe to one or more NFXF email lists. Donors may opt-in to our email subscriber list by:

  1. Checking the opt-in box in the donation form.
  2. Signing up on our website.
  3. Request by phone, email, or other oral or written communication.

All communications provided across all subscription lists contain original content from NFXF to our subscribers. Our subscribers and donors are always our first priority. Any third parties mentioned or linked to are provided as an added value to our subscribers, not to the third party. No personal information about any of our donors and/or subscribers is ever shared without their clear, express consent. For example:

NFXF provides marketing services to reputable, highly vetted research sources to create and share research trial/study participation interest forms with the intent of connecting interested NFXF subscribers, donors, and other users to available research trials/studies.

Anyone interested in participating in and/or requesting additional information about an outside research study or trial must manually fill out a form created specifically for the purpose of providing information and/or inquiring about participation. Additionally, only the information provided by the subscriber, donor, or other user, in that specific form, is shared with the specific research team.

Contact Options

If you have specific questions or concerns about NFXF’s privacy policies, please contact us through one the following:

By Mail

National Fragile X Foundation
1861 International Drive, Suite 200
McLean, VA 22102

By Phone/Toll-Free Helpline

1-800-688-8765

By Email

contact@fragilex.org