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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.

  • CUREUsher is a public awareness and scientific research-oriented, patient-led, registered charity based in the United Kingdom. Their goal is to inspire and encourage further collaboration between scientists, patients and all those touched by Usher syndrome.

    CUREUsher and the Usher Syndrome Coalition have launched a collaborative two-fold biannual awareness day campaign, connecting the Usher syndrome community and their circle of support. Usher Syndrome Awareness Day on the third Saturday of September is a day for the global USH community to connect and educate others about Usher syndrome. On the 2nd of March, we recognize Usher Syndrome Clinician Awareness Day, in hopes of spreading awareness of USH within the medical community so that one day, everyone with this diagnosis can be supported by a doctor who is knowledgeable about Usher syndrome.

  • The mission of Ava’s Voice is to empower youth with Usher syndrome and to educate families, and school communities. They do this through community education events and activities, and by running a 1-week summer camp experience for youth with Usher syndrome.

  • Hear See Hope is a 501(c)(3) 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."

  • Founded in 2013, the Usher 1F Collaborative is a 501(c)(3) 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 Kids UK exists to support, connect and advocate for children and families in the United Kingdom that are living with Usher syndrome.

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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