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Usher syndrome is the most common genetic cause of combined deafness and blindness. More than 400,000 people are affected by this disorder worldwide. There is currently no cure for Usher syndrome. 

You have the power to change that.

Usher Syndrome Coalition: Connecting the Global Usher Community

During this time of uncertainty, stay connected with the Usher Community through our "Hearts on Hand" campaign.

Our mission is to raise awareness and accelerate research while providing information and support to individuals and families affected by Usher syndrome. We strive to be the most comprehensive resource for the Usher syndrome community, bridging the gap between researchers and families. Learn more and get involved.  

Usher Syndrome Blog & News

The Usher Syndrome Coalition is closely monitoring ongoing developments in the coronavirus (COVID-19) spread.
The Usher Syndrome Coalition’s Board of Directors is evaluating the status of our annual USH Connections Conference, with the guidance of up-to-date information released by the Centers for Disease Control and Prevention (CDC) and other advisories within the United States and worldwide. Decisions will be communicated to all of our contacts immediately.

Please join our Hearts on Hand outreach campaign to inform, reach out and provide virtual support to our USH Family.

In this USH Talk, Marcia Brooks shares an overview of iCanConnect, the National Deaf-Blind Equipment Distribution Program. iCanConnect provides free equipment and training to people with both significant hearing and vision loss who meet federal disability and income eligibility guidelines. iCanConnect is a national program with local contacts.

The ReNeuron Group has announced positive long-term data from its ongoing phase 1/2a clinical trial of its hRPC (human retinal progenitor cells) stem cell therapy candidate in Retinitis Pigmentosa. In October 2019 at the American Academy of Ophthalmology Meeting in San Francisco, data presented by Pravin Dugel, MD showed “a group of subjects who had a successful surgical procedure with sustained clinically relevant improvements in visual acuity compared with baseline, as measured by the number of letters read on the ETDRS chart.” The company has submitted a protocol amendment to the FDA to expand their 1/2a study to treat up to a further nine patients in the phase 2a segment of the study with a dose of two million hRPC cells compared to the dose of one million cells used so far. The amended trial protocol allows for a greater range of pre-treatment baseline visual acuity in patients and includes changes that enhance the ability to use microperimetry testing to measure and detect changes in retinal sensitivity in patients treated. If the amendment is approved the company expects to have sufficient data to commence a pivotal clinical study with its hRPC cell therapy candidate in RP by 2021. Furthermore, this clinical program has been granted Orphan Drug Designation in Europe and the US, as well as Fast Track designation from the FDA.

What this means for Usher syndrome:That Usher patients may benefit from this stem cell therapy in the near future if the amendment is approved and the company obtain sufficient data for the initiation of the pivotal clinical trial .

The Usher Syndrome Coalition is soliciting speaker abstracts for research-based presentations for the full-day general session of the 12th Annual USH Connections Conference, taking place Saturday, July 11, 2020 at the Omni Austin Hotel at Southpark in Austin, Texas.

Potential topics for research-based presentations include, but are not limited to: Science, Assistive Technology, Social and Emotional Support, Advocacy.

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