To ask the Secretary of State for Health

(1) when he plans to publish the rare disease plan;

(2) what place severe combined immunodeficiency and other primary immunodeficiencies will have in his Department’s rare disease plan;

(3) when the chief medical officer will next report on progress made in the field of rare diseases.

To ask the Secretary of State for Health what steps he has taken to raise awareness of severe combined immunodeficiency.

In 2012, the Department, in partnership with the other United Kingdom health departments, launched a consultation on the UK Plan for Rare Diseases. The consultation responses were published last November and will be used to inform the development of the plan. The plan is expected to be finalised by the end of 2013.

The UK Plan for Rare Diseases will be a high-level document and will be aimed at improving diagnosis, treatment and care management for all patients with a rare disease, including those with severe combined immunodeficiency and other primary immunodeficiencies.

Along with other evidence, the plan will take into account findings and recommendations on rare diseases from the previous chief medical officer’s 2009 report. The incumbent chief medical officer is monitoring developments on the UK plan with interest.

As part of its work on the plan, the Department is working closely with patient groups such as Rare Disease UK to ensure appropriate awareness of severe combined immunodeficiency.