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ACCESS FOR PHENYLKETONURIA PATIENTS TO TREATMENT, SUPPORT AND INNOVATIVE NEW MEDICINES

EDM (Early Day Motion) 1044: tabled on 08 March 2018

Tabled in the 2017-19 session.

This motion has been signed by 30 Members. It has not yet had any amendments submitted.

Motion text

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.

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.

Cunningham, Mr Jim
Labour
Signed on 13 March 2018
Coventry South
Dodds, Nigel
Democratic Unionist Party
Signed on 23 May 2018
Belfast North
Gaffney, Hugh
Labour
Signed on 14 March 2018
Coatbridge, Chryston and Bellshill
Gibson, Patricia
Scottish National Party
Signed on 17 May 2018
North Ayrshire and Arran
Glindon, Mary
Labour
Signed on 12 March 2018
North Tyneside
Gray, Neil
Scottish National Party
Signed on 14 March 2018
Airdrie and Shotts
Grogan, John
Labour
Signed on 16 July 2018
Keighley
Hendrick, Sir Mark
Labour
Signed on 13 March 2018
Preston
Hoey, Kate
Labour
Signed on 17 April 2018
Vauxhall
Lake, Ben
Plaid Cymru
Signed on 15 March 2018
Ceredigion
Martin, Sandy
Labour
Signed on 22 March 2018
Ipswich
McGinn, Conor
Labour
Signed on 20 March 2018
St Helens North
McKinnell, Catherine
Labour
Signed on 14 March 2018
Newcastle upon Tyne North
Moran, Layla
Liberal Democrat
Signed on 19 April 2018
Oxford West and Abingdon
O'Mara, Jared
Independent
Signed on 8 May 2018
Sheffield, Hallam
Rimmer, Ms Marie
Labour
Signed on 14 March 2018
St Helens South and Whiston
Saville Roberts, Liz
Plaid Cymru
Signed on 14 March 2018
Dwyfor Meirionnydd
Shannon, Jim
Democratic Unionist Party
Signed on 12 March 2018
Strangford
Stephens, Chris
Scottish National Party
Signed on 12 March 2018
Glasgow South West
West, Catherine
Labour
Signed on 12 March 2018
Hornsey and Wood Green
Western, Matt
Labour
Signed on 17 April 2018
Warwick and Leamington
Williams, Dr Paul
Labour
Signed on 8 May 2018
Stockton South
Wilson, Sammy
Democratic Unionist Party
Signed on 5 June 2018
East Antrim
Edwards, Jonathan
Plaid Cymru
Signed on 10 June 2019
Carmarthen East and Dinefwr

There are no withdrawn signatures for this motion.