22q11.2 Deletion Syndrome: Health Education
The question
To ask the Secretary of State for Health and Social Care, what steps the Government is taking to help raise awareness of 22q11.2 deletion syndrome.
Answered by Dr Zubir Ahmed
The Government is committed to improving the lives of people living with rare diseases through the UK Rare Diseases Framework. One of the priorities of the Framework is improving awareness of rare diseases among healthcare professionals, including 22q11.2 deletion syndrome, also known as DiGeorge syndrome. In England, we will publish the fifth action plan updating on the progress of this priority of the UK Rare Diseases Framework in spring 2026.
NHS England supports increased awareness and understanding of DiGeorge syndrome through the NHS Genomics Education Programme which provides accessible evidence-based resources aimed at healthcare professionals, including a dedicated page on 22q deletion syndrome to support recognition, referral and appropriate use of genomic testing. Such resources are available at the following link:
https://www.genomicseducation.hee.nhs.uk/genotes/knowledge-hub/22q11-2-deletion-syndrome/
Information for families is also available at the following link:
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