Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, what steps the Government is taking to fund research into usher syndrome.

The Government supports research into common and rare diseases through the National Institute for Health Research (NIHR). Four major research studies into Usher syndrome are taking place at the NIHR Great Ormond Street Biomedical Research Centre and the NIHR Moorfields Biomedical Research Centre investigating the molecular basis of the disease and advanced therapies for Usher syndrome.

Rare diseases patients also benefit from the pioneering research under the 100,000 Genomes Project. As of October 2018, over 3,000 researchers in 387 United Kingdom and international institutions were part of Genomics England’s Clinical Interpretation Partnership, which have been set up improve understanding of genomic medicine and its application to healthcare; improve understanding of diseases; and lead the way to developing new diagnostics and treatments.