Rare, Genetic and Undiagnosed Conditions APPG

First Registered: 16/03/2016 • Last updated on: 24/01/2024

Note: This APPG was last registered on 24th January 2024. The APPG was not registered in the latest release of the 8th April 2024 and may be defunct.

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To increase awareness in Parliament of rare, genetic and undiagnosed conditions and help to ensure that patients and families affected by those conditions have access to appropriate care and support.

Note: All-Party Parliamentary Groups (APPGs) are informal, cross-party groups formed by MPs and Members of the House of Lords who share a common interest in a particular policy area, region or country. APPGs have no official status within Parliament.
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Former Members - Contact Details - Benefits in Kind - Financial Benefits
Reticulating Splines
Former APPG Members
Liz Twist Portrait
Liz Twist
Chair & Registered Contact
Labour - Blaydon
Joined: 16th December 2020
Departed: 24th January 2024
10 APPG Memberships
Acquired Brain Injury , Carbon Monoxide , Child Contact Centres and Services , Deafness , Genetic Haemochromatosis , Muscular Dystrophy , Respiratory Health , Sleep , Suicide and Self-Harm Prevention , Water
Baroness Neville-Jones Portrait
Baroness Neville-Jones
Vice Chair
Conservative - Life peer
Joined: 16th March 2016
Departed: 24th January 2024
1 APPG Membership
Sovereign Defence Manufacturing Capability
Marion Fellows Portrait
Marion Fellows
Vice Chair
Scottish National Party - Motherwell and Wishaw
Joined: 5th April 2023
Departed: 24th January 2024
1 APPG Membership
Financial Education for Young People
Catherine West Portrait
Catherine West
Vice Chair
Labour - Hornsey and Wood Green
Joined: 8th November 2017
Departed: 24th January 2024
8 APPG Memberships
Global Tuberculosis , Hazaras , London , Malaria and Neglected Tropical Diseases , Norfolk Island , North Korea , Swimming , Woods and Trees
Lord Patel Portrait
Lord Patel
Vice Chair
Crossbench - Life peer
Joined: 16th March 2016
Departed: 24th January 2024
1 APPG Membership
Life Sciences
Lord Turnberg Portrait
Lord Turnberg
Vice Chair
Labour - Life peer
Joined: 16th March 2016
Departed: 22nd February 2023
No other APPG Memberships
Alex Sobel Portrait
Alex Sobel
Vice Chair
Labour (Co-op) - Leeds North West
Joined: 8th November 2017
Departed: 22nd February 2023
23 APPG Memberships
22q11 Syndrome , Aid Match , Albania , British Jews , Cayman Islands , Global Deforestation , Heritage and Regeneration , Hospitality and Tourism , Human-Relevant Science , Internet, Communications and Technology , Investment Fraud and Fairer Financial Services , Kosovo , Modern Conflict , Montenegro , Music , Net Zero , North Macedonia , Renewable and Sustainable Energy , Sweden , United Nations , Video Games and Esports , West Papua , Zoos and Aquariums
Cheryl Gillan Portrait
Cheryl Gillan
Vice Chair
Conservative - Former Member for Chesham and Amersham
Joined: 31st January 2018
Departed: 10th March 2021
No other APPG Memberships
Norman Lamb Portrait
Norman Lamb
Officer
Liberal Democrat - Former Member for North Norfolk
Joined: 8th November 2017
Departed: 5th November 2019
No other APPG Memberships
Stephen Twigg Portrait
Stephen Twigg
Chair & Registered Contact
Labour (Co-op) - Former Member for Liverpool, West Derby
Joined: 8th November 2017
Departed: 13th February 2019
No other APPG Memberships
Vicky Ford Portrait
Vicky Ford
Co-Chair
Conservative - Chelmsford
Joined: 8th November 2017
Departed: 13th February 2019
2 APPG Memberships
Global Education , Sudan and South Sudan
Baroness Hollins Portrait
Baroness Hollins
Officer
Crossbench - Life peer
Joined: 8th November 2017
Departed: 13th February 2019
4 APPG Memberships
Autism , Conception to Age Two - First 1001 Days , Down Syndrome , Holy See
Lord Rogan Portrait
Lord Rogan
Officer
Ulster Unionist Party - Life peer
Joined: 8th November 2017
Departed: 13th February 2019
1 APPG Membership
Gibraltar
Cheryl Gillan Portrait
Cheryl Gillan
Vice Chair
Conservative - Former Member for Chesham and Amersham
Joined: 16th March 2016
Departed: 20th December 2017
No other APPG Memberships
Ben Howlett Portrait
Ben Howlett
Chair & Registered Contact
Conservative - Former Member for Bath
Joined: 16th March 2016
Departed: 2nd May 2017
No other APPG Memberships
Contact Details

Registered Contact:

Liz Twist MP, House of Commons, London, SW1A 0AA. Tel: 0207 219 2221.

Email: liz.twist.mp@parliament.uk

Public Enquiry Point:

Rachel Clayton, Genetic Alliance UK. Tel: 0300 124 0441

Email: appg@geneticalliance.org.uk

Secretariat:

Genetic Alliance UK acts as the group's secretariat. https://www.geneticalliance.org.uk/

Group's Website:

https://www.geneticalliance.org.uk/appg

Benefits in Kind
Date
4 Nov 2022
Source
Genetic Alliance UK
Description
Secretariat   From : 04/11/2022 To : 03/11/2023
Value
£9,001
Date
4 Nov 2021
Source
Genetic Alliance UK
Description
Secretariat   From : 04/11/2021 To : 03/11/2022
Value
£30,001
Date
4 Nov 2020
Source
Genetic Alliance UK
Description
Secretariat   From : 04/11/2020 To : 03/11/2021
Value
£30,001
Date
11 Oct 2018
Source
Genetic Alliance UK
Description
Secretariat   From : 11/10/2018 To : 10/10/2019
Value
£22,501
Date
11 Oct 2017
Source
Genetic Alliance UK
Description
Secretariat   From : 11/10/2017 To : 10/10/2018
Value
£30,001
Date
1 Jan 2017
Source
Genetic Alliance UK
Description
Secretariat   From : 01/01/2017 To : 31/12/2017
Value
£4,501
Date
1 Jan 2016
Source
Genetic Alliance UK
Description
Secretariat   From : 01/01/2016 To : 31/12/2016
Value
£4,501

No direct financial benefits are on record for the Rare, Genetic and Undiagnosed Conditions APPG