Support Charity Navigator

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Usher Syndrome Coalition

Mission

The Usher Syndrome Coalition’s mission is to raise awareness and accelerate research for the most common genetic cause of combined deafness and blindness. The Coalition also provides information and support to individuals and families affected by Usher syndrome.

Vision

The Usher Syndrome Coalition aims to identify and connect the 400,000+ people living with Usher syndrome worldwide with researchers, vital information, and others in the Usher syndrome community. By bridging the gap between researchers and those impacted, we will expedite the full understanding of Usher syndrome necessary for developing treatments for the associated vision, hearing and vestibular issues and, ultimately, a cure.

Goals

1.Bridge the gap between researchers and families by expanding our USH Trust and Usher Syndrome Data Collection Program.
2.Connect those living with Usher syndrome to resources, research, and each other. We make these connections through key programs like our USH Connections Conference, USH Ambassadors Program, and more.
3.Advocating for increased federal funding for Usher syndrome research, on par with funding levels for other rare diseases of similar prevalence in the United States (e.g., ALS, Huntington’s).

WESTFORD MA | EIN: 26-4560897

Profile managed by nonprofit | Is this your nonprofit?

501(c)(3) organization

9 CORNERSTONE SQ STE 400 PMB 224,
WESTFORD MA 01886-1583

https://www.usher-syndrome.org/

800-946-9203

Usher Syndrome Coalition

Mission

Vision

Goals

1.Bridge the gap between researchers and families by expanding our USH Trust and Usher Syndrome Data Collection Program.
2.Connect those living with Usher syndrome to resources, research, and each other. We make these connections through key programs like our USH Connections Conference, USH Ambassadors Program, and more.
3.Advocating for increased federal funding for Usher syndrome research, on par with funding levels for other rare diseases of similar prevalence in the United States (e.g., ALS, Huntington’s).

WESTFORD MA | EIN: 26-4560897

Profile managed by nonprofit | Is this your nonprofit?

501(c)(3) organization

9 CORNERSTONE SQ STE 400 PMB 224,
WESTFORD MA 01886-1583

https://www.usher-syndrome.org/

800-946-9203

Beacon Report

Great
Good
Needs Improvement
Poor
Incomplete
Additional Information

Website Reported on Tax Form:Yes

SCORE100%

No Material Diversion of Assets:Yes

SCORE100%

Records Retention Policy:Yes

SCORE100%

Tax Form Disclosed on Website:Yes

SCORE100%

Accountability Panel
Score	Metric
100%	Website Reported on Tax Form:Yes
100%	No Material Diversion of Assets:Yes
100%	Records Retention Policy:Yes
100%	Tax Form Disclosed on Website:Yes

Science behind the numbers

Nonprofit Resources

Nonprofit Resources

Usher Syndrome Coalition

Mission

Vision

Goals

Usher Syndrome Coalition

Mission

Vision

Goals

Beacon Report