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Phenylketonuria awareness and access to treatment (No. 2)

EDM (Early Day Motion) 2358: tabled on 24 November 2025

Tabled in the 2024-26 session.

This motion has been signed by 26 Members. It has not yet had any amendments submitted.

Motion text

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; 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.

The first 6 Members who have signed to support the motion are the sponsors. The primary sponsor is generally the person who tabled the motion and has responsibility for it. The date shown is when the Member signed the motion.

In addition to the sponsors, the following Members have signed to support the motion.

There are no withdrawn signatures for this motion.