Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, what steps his Department is taking to improve outcomes for children born with Congenital Anomalies and rare diseases; and what steps his Department is taking to improve support available to young people with those conditions when they are transitioning to adult care pathways.

The Government is committed to improving the lives of those living with rare diseases under the UK Rare Diseases Framework. We published the fifth annual England action plan in February 2026, where we report on the steps we have taken to advance the priorities of the framework. NHS England’s National Disease Registration Service, through the National Congenital Condition and Rare Disease Registration Service, owns several actions within the action plan to improve the identification and understanding of people living with rare diseases in England.

NHS England supports continuity of care based on individual need, rather than age alone. Through the Children and Young People’s Transformation Programme, NHS England has published guidance to support effective transition pathways across physical and mental health services, which is available at the following link:

https://www.england.nhs.uk/long-read/supporting-young-people-to-transition-into-adolescent-and-adult-services/

This sets out a zero to 25 year old model of care, with clearer accountability across services and improved support for 16 to 17 year olds, who may be particularly vulnerable to gaps in care. The guidance supports integrated care systems and providers to deliver coordinated, age-appropriate care and was developed with input from young people and clinicians. In addition, the National Institute for Health and Care Excellence has published a revised quality standard on transition from paediatric to adult health services, incorporating feedback from people living with rare conditions and their families or carers.