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Down Syndrome Act 2022

Question for Department of Health and Social Care

UIN 1398, tabled on 23 July 2024

To ask the Secretary of State for Health and Social Care, what progress his Department has made on producing statutory guidance under the Down Syndrome Act 2022.

Answered on

30 July 2024

The Department is currently considering next steps on producing the Down syndrome statutory guidance, as required under the Down Syndrome Act 2022, and further information will be provided in due course.

Officials have engaged with stakeholders to progress the development of draft guidance. This has included the establishment of an advisory group to inform the development process, and carrying out a national call for evidence and review of the evidence to gain a better understanding of the specific needs of people with Down syndrome and how these can be met by relevant authorities. The call for evidence received over 1,500 responses, including responses from people with Down syndrome, their families and carers, professionals, organisations, and stakeholder groups representing people with genetic conditions.