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Rarer Diseases

Volume 488: debated on Monday 2 March 2009

To ask the Secretary of State for Health if he will take steps to increase levels of diagnosis and treatment of rarer diseases. (259402)

The National Commissioning Group nationally commissions highly specialised services, which is how the national health service addresses rare conditions, on behalf of the NHS in England.

The National Commissioning Group considers new bids for additions to the national commissioning portfolio on an annual basis. The following services have been added to the national portfolio effective from 1 April 2009:

Ataxia telangiectasia service for children;

Autoimmune paediatric gut syndromes service;

Gender identity development service for children and adolescents;

Chronic pulmonary aspergillosis service;

Complex Ehlers Danlos syndrome service;

Complex Neurofibromatosis type 1 service;

Encapsulating sclerosing peritonitis surgical service;

Paroxysmal nocturnal haemoglobinuria;

Deaf child and adolescent mental health outreach service; and

Ventricular assist devices as bridge to heart transplant for adults and children.

The National Commissioning Group is currently considering bids to be added to the national commissioning portfolio from 2010-11. Advice will be passed to Ministers in the autumn to make decisions about any new services proposed to be nationally commissioned.