The Usher 1F Collaborative has recently announced the opening of registration for its scientific conference titled “Therapeutic Strategies for Large Protein Coding Genes in Usher Syndrome.” This event will be held as a virtual meeting from May 13-14, 2021. The event will be free to attend. This conference will serve as a convergence of researchers from around the world who are focused on Usher syndrome, a rare disease.
About Usher Syndrome
Usher syndrome is the leading cause of deafblindness (the state of being both blind and deaf); however, the disorder is still generally rare. The syndrome is currently incurable and there are three different types. There are a total of 11 different genes that, if mutated, can cause the disorder. Usher syndrome type 2 is characterized by milder hearing impairment and delayed onset of vision decline. It is linked to mutations of the DFNB31, USH2A, and GPR98 genes. This type may be more common than previously thought and many patients may be undiagnosed. Vision loss is linked to retinitis pigmentosa, in which the retinal cells degenerate over time, and hearing loss is due to defects of the inner ear. There is no known treatment that can stop the progression of symptoms; gene therapy may be the most effective avenue for research. The rate of disease progression can vary drastically from person to person. To learn more about the disease, click here.
About The Event
Although this event is primarily focused on science and research, families that are impacted by the syndrome are still strongly encouraged to participate. The events will of course feature closed captions and several of the sessions, such as ASL interpretation, will be of particular interest to patient families.
The Chan Zuckerberg Initiative (CZI), of which the Usher 1F Collaborative is a member, has provided critical funding support for this event. The collaborative works in tandem with other relevant organizations, such as the Usher Syndrome Society, the Foundation Fighting Blindness, and the Usher Syndrome Coalition.
Click here to view the conference agenda.
Click here to register for the event.