Early day motion tabled by primary sponsor Jim Shannon (Democratic Unionist Party), on Monday, 6 July 2026, in the House of Commons. It is signed by 2 members in total.

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Phenylketonuria awareness and treatment access in Northern Ireland

That this House notes with concern that Northern Ireland has one of the highest incidence rates of Phenylketonuria (PKU) globally, affecting approximately 1 in 4,000 newborns compared to the UK wider average of 1 in 10,000; acknowledges that PKU is a debilitating, rare genetic metabolic condition requiring a life-altering, highly restrictive low-protein diet and specialized medical supplements to prevent irreversible neurological damage and severe intellectual disabilities; celebrates the efforts of grassroots advocates, including Northern Ireland campaigners from the National Society for Phenylketonuria, and local pharmaceutical innovators like Craigavon-based Galen Limited, for their continuous work to elevate public understanding and support local families; welcomes the recent cross-party political solidarity shown on International PKU Day, including the symbolic illumination of civic buildings across Northern Ireland; expresses concern regarding the daily social, financial, and psychological burdens placed on the estimated 400 individuals living with PKU and their carers across the region; recognises that while the routine newborn heel prick test provides critical early diagnosis, managing the condition remains a lifelong struggle; acknowledges that recent advancements in medical technology and therapeutics offer transformative opportunities to reduce this dietary burden; and calls on the UK Government to work collaboratively with the Northern Ireland Department of Health to ensure long-term, equitable funding for metabolic clinics and to accelerate access to cutting-edge, innovative new treatments, such as sepiapterin, to fundamentally improve quality of life.

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Secondary information

Type

Early day motion

Reference

533 

Session

2026-27

Other sponsors

Gregory Campbell

Legislation

Northern Ireland

Phenylketonuria

Link

View this Early day motion on edm.parliament.uk