Join the Coalition

We invite Usher syndrome-focused organizations around the world 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. The Coalition USH Partnership facilitates collaborative efforts, minimizes duplication and creates a global network of support.

The Usher Syndrome Coalition is the largest organization in the world seeking to identify and support every person living with Usher syndrome. Our 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. 

By providing hope, connections and information, we are building an active, empowered and informed community. This gives researchers access to their most important resource: people living with Usher syndrome. Building a community will ensure that treatments and a cure become a reality.

USH Partner Organization Benefits:

As an official USH Partner, your organization will gain membership into an internationally recognized organization and benefit from these three key areas:

Event and Mission Support

  • Potential donors directed to your organization
  • Your organization’s events included on Master USH Events Calendar on Coalition website
  • Your funding milestones included on Coalition website, if desired (i.e. Research and labs your organization funds, services your organization provides, etc)
  • Event promotion via email and social media
  • Coordination of events (assistance dependent on financial commitment)
  • Event updates included in the Usher Syndrome Coalition Newsletter
  • Linked logo placement on Coalition website

Access to the Community

  • Complimentary booth and two entries to the annual USH Connections Conference
  • Connections with individuals and families aligned with your organization’s mission
  • Your organization’s information on Coalition USH Partners Webpage
  • Opportunities for promotion and participation in Special Projects

Ongoing Collaboration

  • Quarterly USH Partner discussions via phone conference with all participating partners
  • Support and information from Coalition staff via phone and email

Join Us

By pledging to support the community building efforts of the Usher Syndrome Coalition, you are ensuring our collective ability to find and support everyone living with Usher syndrome. By partnering with the Coalition and connecting with our growing community, we will help your organization fulfill its mission.

For more information about becoming an USH Partner, contact Krista Vasi at or +1-800-946-9203.