Margaret Ritchie – 2016 Parliamentary Question to the Department of Health

The below Parliamentary question was asked by Margaret Ritchie on 2016-01-06.

To ask the Secretary of State for Health, what steps he is taking to increase research into the causes and types of rare diseases in England.

George Freeman

The National Institute for Health Research (NIHR) has invested significantly in world-class research infrastructure in the National Health Service, to provide the facilities and people to undertake and increase research into rare diseases.This includes significant funding through the NIHR Biomedical Research Centres and Units, the NIHR Bio Resource – Rare Diseases which provides opportunities for patients, their families and health volunteers to take part in early translational research on the basis of their genotype and phenotype, and the dedicated NIHR Rare Diseases Translational Collaboration that brings together the country’s leading researchers in rare diseases and promotes collaboration including with the life sciences industry.

In 2012 the NIHR also launched a call for Applied Clinical Research on Very Rare Diseases as part of the researcher-led funding streams across six of the NIHR Research Programmes. This call was issued in support of the UK Strategy for Rare Diseases and in recognition of the need for increased high quality evidence on the organisation of super specialised services or their commissioning and to improve the health outcomes for sufferers of rare diseases.