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Access For Phenylketonuria Patients To Treatment, Support And Innovative New Medicines

EDM number 1044 in 2017-19, proposed by Faisal Rashid on 08/03/2018.
Categorised under the topics of Diseases, Food and Health services.

That this House recognises the need to raise awareness of phenylketonuria (PKU), a rare metabolic disease which inhibits the ability to metabolise phenylalanine within protein; notes that the disease can cause irreversible brain damage or impaired cognitive or neurological function if not correctly treated; is concerned that the only treatment currently provided by the NHS is a severely restricted diet which places a great burden on patients or carers; acknowledges the impact of PKU on patients, carers and family life; further notes the particular need for care and treatment to support women with PKU in pregnancy and prior to conception to ensure safe pregnancies that minimise stress on women with PKU; further recognises the need to ensure consistent access to special dietary foods, protein substitutes, dietetic and psychological support to assist people with PKU to manage their condition; understands that the medicine Kuvan for the treatment of PKU is due to be appraised for use on the NHS; further understands that Kuvan is widely available for patients with PKU in the majority of European countries; and supports the calls of the charity the National Society for Phenylketonuria (UK) Limited for the appraisal to be concluded swiftly.

This motion has been signed by a total of 29 MPs.

MPDateConstituencyPartyType
Faisal Rashid08/03/2018Proposed
08/03/2018BlaydonLabourSeconded
Chris Williamson08/03/2018Derby NorthLabourSeconded
Tim Farron08/03/2018Westmorland and LonsdaleLiberal DemocratSeconded
Ian Austin08/03/2018Dudley NorthLabourSeconded
Peter Aldous08/03/2018WaveneyConservativeSeconded
Mary Glindon12/03/2018North TynesideLabourSigned
Jim Shannon12/03/2018StrangfordDUPSigned
Chris Stephens12/03/2018Glasgow South WestScottish National PartySigned
Catherine West12/03/2018Hornsey and Wood GreenLabourSigned
Mark Hendrick13/03/2018PrestonLabourSigned
Jim Cunningham13/03/2018Coventry SouthLabourSigned
14/03/2018Coatbridge, Chryston and BellshillLabourSigned
Liz Saville Roberts14/03/2018Dwyfor MeirionnyddPlaid CymruSigned
Catherine McKinnell14/03/2018Newcastle upon Tyne NorthLabourSigned
Marie Rimmer14/03/2018St Helens South and WhistonLabourSigned
Neil Gray14/03/2018Airdrie and ShottsScottish National PartySigned
15/03/2018CeredigionPlaid CymruSigned
Conor McGinn20/03/2018St Helens NorthLabourSigned
22/03/2018IpswichLabourSigned
Kate Hoey17/04/2018VauxhallLabourSigned
17/04/2018Warwick and LeamingtonLabourSigned
19/04/2018Oxford West and AbingdonLiberal DemocratSigned
08/05/2018Stockton SouthLabourSigned
08/05/2018Sheffield, HallamLabourSigned
Patricia Gibson17/05/2018North Ayrshire and ArranScottish National PartySigned
Nigel Dodds23/05/2018Belfast NorthDUPSigned
Sammy Wilson05/06/2018East AntrimDUPSigned
John Grogan16/07/2018Signed

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