Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, what steps he is taking to increase investment in research into rare conditions.

The Government supports research into common and rare diseases through the National Institute for Health Research (NIHR). In 2016 my Rt. hon. Friend the Secretary of State for Health and Social Care announced a £816 million investment in the NIHR Biomedical Research Centres, over five years from 1 April 2017, which has been awarded to 20 leading National Health Service and university partnerships across England. Each of the 20 NIHR Biomedical Research Centres hosts the development of new, ground-breaking treatments, diagnostics, prevention and care for patients in a wide range of diseases and has considerable expertise, capacity and activity in research for rare diseases.

The NIHR Clinical Research Network is available to support the set-up and timely delivery of commercial and non-commercial studies and trials in England which would include studies on rare diseases.

Rare diseases patients also benefit from the pioneering research as part of the 100,000 Genomes Project. As of late 2017, over 2,000 researchers in 342 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.