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Batten's Disease

Volume 410: debated on Friday 19 September 2003

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To ask the Secretary of State for Health (1) what funding has been given to research of Batten's Disease; and how many children he estimates have the condition;[131240](2) what steps his Department has taken to increase the awareness among

(a) general practitioners and (b) other health professionals of Batten's Disease. [131241]

The main agency through which the Government support medical and clinical research is the Medical Research Council (MRC). The MRC has large current portfolios on neurological disorders and genetics. However, none of this research is specifically into Batten's disease. Nevertheless, this work includes a considerable amount of underpinning research that may be of relevance. The MRC has funded some research on Batten's disease in the past and currently carries out work on the main symptoms of the disease.Information on the number of children with Batten's disease is not collected centrally.The Department has for many years provided section 64 funding to Climb (Children Living with Inherited Metabolic Diseases), a voluntary organisation which provides information, advice and support to children suffering from metabolic diseases, including Batten's disease, and their families, as well as educating health care professionals. Climb is currently in receipt of a project grant for £63,220 over the period from 2002–03 to 2005–06.