Ivy'v Story What care and support is available for those with deletion 22q11 syndrome?


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Raising Private Members Bill, House of Commons, Tuesday 05 June 2018

HofC logoMax Appeal supports David Duguid MP (and Chair of the 22q11 All Party Parliamentary Group (APPG)) Ten Minute Rule Bill where he called for the Secretary of State for Health and Social Care to conduct a review into 22q11 Deletion Syndrome (also known as Di George Syndrome) and for the NHS to publish a strategy once that work is complete.

Screening using the Infant heel prick test.

Image: raising_private_members_bill_247850544_medium.jpgThis screening could be done by using heel prick tests that are given to five-day old babies and used for screening of Severe Combined Immunodeficiency (SCID) which is currently being trialled in the UK. Currently, nine rare but serious health conditions are tested for in the heel prick test and by including 22q11 it would only add a small cost to the test.

Max Appeal hopes the Bill will be successful and help to provide early detection and treatment to the second most common chromosomal syndrome which affects thousands of children every year but is frequently misdiagnosed or completely missed.

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News release.