Usher Syndrome Registry

Registration

Any field with an asterisk(*) is a required field.
You can register yourself or a family member.
To register yourself, please enter your contact information in the 'Name and Contact' and 'Address' sections.
To register another adult with Usher syndrome, please enter their contact information in the 'Name and Contact' and 'Address' sections. We only need information for the person who has Usher Syndrome.
To register a child, please enter the parent or guardian’s contact information in the 'Name and Contact' and 'Address' sections. In the Usher Syndrome Registrant section, click the check box for 'I am registering a minor' and enter the name of the minor in the dialog box that appears.
To register more than one child, you will need to create a new user account for each child. This is done intentionally so that children can eventually be transitioned to adults with their own record.

Name and Contact

*First

Middle

*Last

Suffix

Phone Number

*Email Address

Address

Line 1

Street, P.O. box, c/o, company name, etc.

Line 2

Apartment, suite, building, unit, floor, etc.

City

State/Province (US/Canada)

State (International)

Zip/Postal Code

*Country

Usher Syndrome Registrant

I am registering a minor

Name of minor

*First

Middle

*Last

Suffix

Usher Type

Is diagnosis genetically confirmed? Click for yes

Gender
Female Male

Date of Birth

I would like to be notified of upcoming clinical trials

I might be interested in participating in clinical trials

Agreement

TERMS OF USE

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

This Terms of Use Agreement ('Agreement') explains your rights and obligations in using this website.  Please read this Agreement carefully.  By clicking 'Accept,' you are telling us you read and understand everything in this document.

NO CHARGE.  This website is provided to you free of charge.

AS-IS.  You agree to use this website as-is.

SUBJECT TO CHANGE.  You agree that the Coalition may change or discontinue the website in its sole discretion and with no prior notice to you.

SOLE CONSIDERATION.  You agree that the Coalition’s sole offer to you is to provide this website as-is, or as modified by the Coalition in its sole discretion, until such time as the Coalition should choose to discontinue this website in its sole discretion.

PRIVACY STATEMENT.  By agreeing to these Terms of Use, I also accept the Coalition’s Privacy Statement. [Click

NOT PROFESSIONAL ADVICE.  You agree and understand the Coalition does not provide medical advice, financial advice, or legal advice.  You will not rely on any statements made on this website as though it were professional advice.

CLINICAL RESEARCHERS INDEPENDENT.  You may elect to be notified by the Coalition of clinical research regarding Usher Syndrome.  If so notified, you may contact the relevant clinical researcher.  You agree and understand that the Coalition is independent of any and all such clinical researchers. The Coalition is not responsible for any actions taken or statements made by such clinical researchers.  The Coalition has no duty to screen or supervise such clinical researchers.

DISPUTE RESOLUTION -- VENUE.  You agree to be subject to the jurisdiction of Boston, Massachusetts.  You agree that any dispute between you and us will be resolved in Boston, Massachusetts, to the exclusion of any other potential venue.

DISPUTE RESOLUTION – ARBITRATION, NO CLASS ACTIONS.  You agree that you will only sue us as an individual.  You agree that you will not file a class action, or participate in a class action.  You and we agree that any dispute between us can only be brought in binding individual (non-class) arbitration to be administered by the American Arbitration Association ('AAA').  If, for any reason, AAA is not available, you or we may file our case with any national arbitration company.

LIMITATION OF LIABILITY.  You agree that unless we do something that is grossly negligent or an act of willful misconduct, we will not be liable to you or to any third party.

Agree to terms of use

Security

*Username (case-sensitive)

*Password (min: 8 characters)
(8 characters minimum)

*Confirm Password

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created by families with Usher for families with Usher