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Usher 1F Collaborative

Usher 1F Collaborative is a patient-led research network driven by a group of patients and their families who work together with researchers and clinicians. Their mission is to fund medical research for a cure for Usher syndrome type 1F. The organization is bringing together researchers who are already working on a cure for Usher 1F and other researchers working in the fields of gene and stem cell therapies to share and learn from one another and to foster new collaborations. So far, the organization has partnered with 8 research laboratories with a total of $6 million invested in research, $3.4 million of that raised by the organization and the remainder by their researchers. Usher 1F Collaborative won a grant award from the Chan Zuckerberg Initiative Rare As One Project in 2020, and has launched a natural history study in partnership with Foundation Fighting Blindness in preparation for future clinical trials. The initiatives of the organization will help move the research forward and speed up the pace of the research for patients in need of a cure. For more information, visit:


Disclaimer: The information contained in this page is provided by the partnering patient organization for informational purposes only.  The 40 Percent Inc. does not warrant its completeness or accuracy, and it should not be construed as an endorsement by The 40 Percent Inc. or relied upon as a basis for your support for the partnering patient organization.  The information is subject to change without notice.

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