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Connect with the USH Community
created by families with Usher for families with Usher
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Contact us
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)
Select a state or province
Alabama
Alaska
Alberta
American Samoa
Arizona
Arkansas
British Columbia
California
Colorado
Connecticut
Delaware
District of Columbia
Federated States of Micronesia
Florida
Georgia
Guam
Hawaii
Idaho
Illinois
Indiana
Iowa
Kansas
Kentucky
Louisiana
Maine
Manitoba
Marshall Islands
Maryland
Massachusetts
Michigan
Military - AA
Military - AE
Military - AP
Minnesota
Mississippi
Missouri
Montana
Nebraska
Nevada
New Brunswick
Newfoundland and Labrador
New Hampshire
New Jersey
New Mexico
New York
North Carolina
North Dakota
Northern Mariana Islands
Northwest Territories
Nova Scotia
Nunavut
Ohio
Oklahoma
Ontario
Oregon
Palau
Pennsylvania
Prince Edward Island
Puerto Rico
Quebec
Rhode Island
Saskatchewan
South Carolina
South Dakota
Tennessee
Texas
Utah
Vermont
Virginia
Virgin Islands
Washington
West Virginia
Wisconsin
Wyoming
Yukon Territory
State (International)
Zip/Postal Code
*Country
Select a country
Albania
Algeria
American Samoa
Andorra
Angola
Anguilla
Antarctica
Antigua and Barbuda
Argentina
Armenia
Australia
Austria
Azerbaijan
Bahamas
Bahrain
Bangladesh
Barbados
Belarus
Belgium
Belize
Benin
Bermuda
Bhutan
Bolivia
Bosnia and Herzegovina
Botswana
Bouvet Island
Brazil
British Indian Ocean Territory
Brunei
Bulgaria
Burkina Faso
Burundi
Cambodia
Cameroon
Canada
Cape Verde
Cayman Islands
Central African Republic
Chad
Chile
China
Christmas Island
Cocos (Keeling) Islands
Colombia
Comoros
Congo
Congo, The Democratic Republic of the
Cook Islands
Costa Rica
Cote d'Ivoire
Croatia
Cuba
Cyprus
Czech Republic
Denmark
Djibouti
Dominica
Dominican Republic
East Timor
Ecuador
Egypt
El Salvador
Equatorial Guinea
Eritrea
Estonia
Ethiopia
Falkland Islands
Faroe Islands
Fiji Islands
Finland
France
French Guiana
French Polynesia
French Southern territories
Gabon
Gambia
Georgia
Germany
Ghana
Gibraltar
Greece
Greenland
Grenada
Guadeloupe
Guam
Guatemala
Guinea
Guinea-Bissau
Guyana
Haiti
Heard Island and McDonald Islands
Holy See (Vatican City State)
Honduras
Hong Kong
Hungary
Iceland
India
Indonesia
Iran
Iraq
Ireland
Israel
Italy
Jamaica
Japan
Jordan
Kazakstan
Kenya
Kiribati
Kuwait
Kyrgyzstan
Laos
Latvia
Lebanon
Lesotho
Liberia
Libyan Arab Jamahiriya
Liechtenstein
Lithuania
Luxembourg
Macao
Macedonia
Madagascar
Malawi
Malaysia
Maldives
Mali
Malta
Marshall Islands
Martinique
Mauritania
Mauritius
Mayotte
Mexico
Micronesia, Federated States of
Moldova
Monaco
Mongolia
Montserrat
Morocco
Mozambique
Myanmar
Namibia
Nauru
Nepal
Netherlands
Netherlands Antilles
New Caledonia
New Zealand
Nicaragua
Niger
Nigeria
Niue
Norfolk Island
Northern Mariana Islands
North Korea
Norway
Oman
Pakistan
Palau
Palestine
Panama
Papua New Guinea
Paraguay
Peru
Philippines
Pitcairn
Poland
Portugal
Puerto Rico
Qatar
Reunion
Romania
Russian Federation
Rwanda
Saint Helena
Saint Kitts and Nevis
Saint Lucia
Saint Pierre and Miquelon
Saint Vincent and the Grenadines
Samoa
San Marino
Sao Tome and Principe
Saudi Arabia
Senegal
Seychelles
Sierra Leone
Singapore
Slovakia
Slovenia
Solomon Islands
Somalia
South Africa
South Georgia and the South Sandwich Islands
South Korea
Spain
Sri Lanka
Sudan
Suriname
Svalbard and Jan Mayen
Swaziland
Sweden
Switzerland
Syria
Taiwan
Tajikistan
Tanzania
Thailand
Togo
Tokelau
Tonga
Trinidad and Tobago
Tunisia
Turkey
Turkmenistan
Turks and Caicos Islands
Tuvalu
Uganda
Ukraine
United Arab Emirates
United Kingdom
United States
United States Minor Outlying Islands
Uruguay
Uzbekistan
Vanuatu
Venezuela
Vietnam
Virgin Islands, British
Virgin Islands, U.S.
Wallis and Futuna
Western Sahara
Yemen
Yugoslavia
Zambia
Zimbabwe
Usher Syndrome Registrant
I am registering a minor
Name of minor
*First
Middle
*Last
Suffix
Usher Type
1
1b
1c
1d
1f
1g
2
2a
2c
2d
3
Unknown
Is diagnosis genetically confirmed? Click for yes
Gender
Female
Male
Date of Birth
Day
1
2
3
4
5
6
7
8
9
10
11
12
13
14
15
16
17
18
19
20
21
22
23
24
25
26
27
28
29
30
31
Month
Jan
Feb
Mar
Apr
May
Jun
Jul
Aug
Sep
Oct
Nov
Dec
Year
1923
1924
1925
1926
1927
1928
1929
1930
1931
1932
1933
1934
1935
1936
1937
1938
1939
1940
1941
1942
1943
1944
1945
1946
1947
1948
1949
1950
1951
1952
1953
1954
1955
1956
1957
1958
1959
1960
1961
1962
1963
1964
1965
1966
1967
1968
1969
1970
1971
1972
1973
1974
1975
1976
1977
1978
1979
1980
1981
1982
1983
1984
1985
1986
1987
1988
1989
1990
1991
1992
1993
1994
1995
1996
1997
1998
1999
2000
2001
2002
2003
2004
2005
2006
2007
2008
2009
2010
2011
2012
2013
2014
2015
2016
2017
2018
2019
2020
2021
2022
2023
I would like to be notified of upcoming clinical trials
I might be interested in participating in clinical trials
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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.
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