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created by families with Usher for families with Usher

Privacy Statement

We are the Usher Syndrome Coalition. The Coalition provides this web site, including the USH Trust.

Your privacy is important to us. In this Privacy Statement, we explain what personal information we collect, and how we protect it.

Does the Coalition collect personal information?
Yes. We ask for personal information when a visitor asks to sign up for the USH Trust.

We do not collect any personal information from visitors without directly asking for it.

Because of how the Internet works, we do also receive some other information that does not include your name as you use our site.

I’d like to sign up for the USH TRUST. What personal information will you ask me to provide?
We have made a screenshot of our registration form. You can view that screenshot before starting the registration process by clicking here.

The screenshot shows that we ask for your first and last name, email address, date of birth and country. It is optional to add your phone number, address and gender. We ask if you are registering a minor, the type of Usher syndrome you have (if known) and whether that diagnosis has been genetically confirmed. We also ask if you would like to be notified of upcoming clinical trials.

How will the Coalition use this personal information?
We have two goals. We aim to support individuals and families affected by Usher Syndrome. We also aim to help inform those individuals and families of clinical research in which they can participate.

The Coalition will only use the personal information you provide us for those reasons.

Will the Coalition share my personal information with anyone else?
The Coalition will only share your personal information with third parties if the Coalition believes it has to share that information:

  • to run this site (for example, information you submit may be processed through our web hosting company;
  • to obtain legal advice;
  • as required by law (for example, to answer a subpoena); or
  • to prevent fraud or physical harm.
The Coalition will not share your personal information with clinical researchers. We will only inform you of clinical research opportunities, and only if you expressed an interest. Only if you then reach out to the researchers will they know who you are.

How do I change my information on file, or ask you to delete it?
You can change the information on file in the USH Trust at any time by logging in to your account. You can also tell us to delete information submitted. To do so, or to ask any other questions or make requests, contact us:

By mail:
Usher Syndrome Coalition
9 Cornerstone Square, Suite 400-224
Westford, MA 01886
By phone:
+1 (800) 946-9203, Option 1

How will you let me know if this Privacy Statement ever changes?
If this Privacy Policy ever changes, we will post a new version on this site and e-mail you a new version.

We will never use your information in a materially different way unless we directly ask you and you give us your affirmative, written agreement in advance.

When did this Privacy Statement become effective?
This Privacy Statement is effective as of January 1, 2012.