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Early day motion · EDM 2349 · 24 Nov 2025

Phenylketonuria awareness and access to treatment

Tabled by Jim Shannon (Democratic Unionist Party) 11 signatures

The motion

That this House recognises the progress made in improving the care of people with phenylketonuria (PKU), a rare inherited metabolic disorder which prevents the body from properly metabolising phenylalanine; welcomes that many patients have benefitted from access to sapropterin, which has improved quality of life for some individuals living with PKU; notes, however, that significant unmet clinical needs remain, with many patients unable to benefit from existing treatments and still reliant on a highly restrictive diet; and further recognises the continuing impact of PKU on patients, carers and families and highlights the need for access to further innovative treatments and technologies that can improve outcomes and reduce the lifelong burden of PKU.

Signatories (11)

Source: the official Early Day Motions database.