Building the Usher Community, One Person at a Time

The Usher Syndrome Coalition is the core of the global Usher syndrome community, working to find and support every individual and family living with Usher syndrome. We accomplish this using two separate but equally important data collection tools - the USH Trust, and the Usher Syndrome Data Collection Program powered by RARE-X.

Sign up for the USH Trust

The Usher Syndrome Coalition's "USH Trust" is the largest international contact database of individuals with Usher syndrome, and our most powerful tool to connect, inform, and support individuals within the Usher community. Those who join the USH Trust are also the first to learn about the latest research opportunities.

Join the Usher Syndrome Data Collection Program!

Individuals with Usher syndrome who are passionate about research are invited to join the Usher Syndrome Data Collection Program, or USH DCP, powered by RARE-X. Health information entered into this secure platform will become part of a global database of de-identified information available to researchers worldwide. As the DCP grows, more researchers will become aware of Usher syndrome, leading to the development of clinical trials and treatments for the vision loss, hearing loss, and balance issues associated with Usher syndrome.

Data collection is a crucial step in treatment development. RARE-X invites researchers from around the world to identify trends and gather information that will lead to clinical trials. 

To share your data, please visit the Data Collection portal:

To learn more, watch the Usher syndrome onboarding webinar with RARE-X: English with ASL and captions | español.
(Download the transcript: English | español. Download the slides.)

The Usher Syndrome Coalition community is partnering with Global Genes' RARE-X Data Collection Program (DCP), a collaborative platform for global data sharing and analysis to accelerate treatments for rare diseases. 

The Usher Syndrome DCP will:

  • inform researchers how Usher syndrome changes over time. 
  • enable the use of data as a placebo (instead of actual patients) in a clinical trial. 
  • enable better data to use in clinical trials. 
  • give individuals with Usher syndrome the opportunity to participate in clinical trials.
  • reduce the time it takes to study new medicines. 
  • speed up the time to deliver treatments to people with Usher syndrome.

The Usher Syndrome DCP is participant-owned (meaning, you own your data) but enabled by RARE-X technology. All data governance, consent, support, and data security are put in place by RARE-X. Individuals and families with Usher syndrome will benefit from a streamlined process for collecting research-ready data in a phased approach at no cost to participants, the Usher Syndrome Coalition, or the greater rare disease community.

Frequently Asked Questions:

  • RARE-X is a program of Global Genes, created for global data sharing and analysis to increase the understanding of, and accelerate treatments for, rare diseases.

  • Q: Will existing data be transferred from the Usher Syndrome Coalition’s USH Trust to the Usher Syndrome Data Collection Program (DCP)?

    A: Information in the USH Trust will NOT be transferred to the Usher Syndrome Data Collection Program (DCP). Anyone who wants to join the DCP will be required to set up an account with RARE-X at https://ushersyndrome.rare-x.org/ The Usher Syndrome Coalition does not have access to the information you provide to RARE-X. You can give permission to RARE-X to share your name and email address with the Usher Syndrome Coalition, but we will not receive any additional information about you.

    Both the DCP and The USH Trust have value and we encourage the Usher community to sign up for both.

  • Q: What will happen to the data stored by the Usher Syndrome Coalition?

    A: The Coalition will maintain and continue to grow the USH Trust. In fact, we recently updated the USH Trust to help us get to know and serve the community better. This will allow us to continue to do what we do best:
    1) Identify the community.
    2) Build the community.
    3) Connect the Usher community with the research community. 
    4) Support the community via email, telephone, VP, webinars, our USH Connections Conference, and the many resources on our website.

  • A: If you are interested in research, treatments, and/or a cure for Usher syndrome, the answer is Yes! Click to learn more.

  • Q: Why did the Usher Syndrome Coalition choose RARE-X?

    A: The Usher Syndrome Coalition chose RARE-X because:
    1) It uses structured and standardized Q&A
    2) Governance and security are handled by RARE-X
    3) There is no cost to individuals, organizations, or researchers
    4) It offers the ability to analyze data across disease data (interesting for potential links between Usher syndrome and other diseases or disorders).
    5) It streamlines researcher access to data through its Federated Data Access Program

  • Q: Why participate in data collection?

    A: Watch in English or ASL.

  • A. Yes - after you create an account in the Usher Syndrome DCP, you will be able to upload your genetic report. If you need help, you can watch this video with detailed directions.

To learn more, watch the Usher syndrome onboarding webinar with RARE-X.

Usher Syndrome Data Collection Program

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Watch the Usher syndrome onboarding webinar with RARE-X: