Go Global with USH

USH Partner Organizations

Building a community is the Usher Syndrome Coalition's driving force. By fostering lasting partnerships with the growing number of Usher syndrome-focused organizations around the world, the Coalition facilitates collaborative efforts, minimizes duplication and creates a global network of support.

USH Partners support the community building efforts of the Usher Syndrome Coalition, ensuring our collective ability to find and support everyone living with Usher syndrome. The work we do is made possible through collaboration with these incredible organizations.

Click here to learn more about becoming an USH Partner.

Our USH Partners

  • The Usher Syndrome Society is a non-profit that raises awareness and funds research for Usher syndrome (USH) to ultimately find a cure.

    The Usher Syndrome Society and the Usher Syndrome Coalition are collaborating to bring awareness to the most common genetic cause of combined deafness and blindness: Usher syndrome.

    Their 'Shine a Light on Usher Syndrome' campaign aims to give a face and voice to Usher syndrome through photojournalism and Art. The goal: to build empathy and awareness about this disease, in the hopes of finding new treatments and, ultimately, a cure.

    Learn more at: http://www.ushersyndromesociety.org/

  • Hear See Hope is a 501c3 nonprofit and a founding partner of the Usher Syndrome Coalition. Their mission is to support Usher syndrome research and awareness efforts. "Through excellent focus, we can create, communicate and gain knowledge of this currently incurable retinal disorder. Our funds will be directly focused to Usher syndrome research and awareness and by doing so we can target the needs of researchers and the broader Usher syndrome community."

  • Ava's Voice helps raise awareness and foster connections for the Usher syndrome community through initiatives such as educational training, presentations, simulated activities and community outings, family-to-family calls, parent circles and family retreats. Their latest initiative, USH THIS 2020, centers around the goal to create a week-long sleepaway camp for youth with Usher syndrome to engage with peers, adolescents and adults with Usher syndrome in a barrier-free environment.

    Learn more at: https://www.avasvoice.org/

  • Usher 1F Collaborative is a 501c3 nonprofit foundation whose mission is to fund medical research to find an effective treatment to save or restore the vision of those with Usher Syndrome type 1F.

    Usher 1F Collaborative grew out of the lack of research specific to Usher Syndrome type 1F. While one family founded this nonprofit foundation in 2013, they have grown into a group of affected families working together for a cure across the globe.

    To date, the Usher 1F Collaborative has funded over $1 million in research at four academic research labs, the Universities of Oregon, Maryland, Iowa, and Western Australia. Affiliated researchers are also working on a cure with private and government funding at Harvard University, the Institute for Ophthalmology in Basel, Switzerland, and Center for Eye Research Australia. For more details on their work, please visit: https://www.usher1f.org/what-we-do/the-research.html

Become an USH Partner

We invite your organization to join the Usher Syndrome Coalition in a coordinated movement to create a global Usher community. By collaborating and building bridges between the growing number of organizations across the globe, we, as individual entities and as a consortium, can best serve the USH community. Click here to learn more.

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