Rare, Genetic and Undiagnosed Conditions APPG

First Registered: 16/03/2016 • Last updated on: 30/05/2024

Note: This APPG was last registered on 30th May 2024. The APPG was not registered in the latest release of the 20th November 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.
View Official Register Entry
Former Members - Contact Details - Benefits in Kind - Financial Benefits
Reticulating Splines
Former APPG Members
Liz Twist Portrait
Liz Twist
Chair & Registered Contact
Labour - Blaydon and Consett
Joined: 16th December 2020
Departed: 30th May 2024
2 APPG Memberships
Respiratory Health , Suicide and Self-Harm Prevention
Baroness Neville-Jones Portrait
Baroness Neville-Jones
Vice Chair
Conservative - Life peer
Joined: 16th March 2016
Departed: 30th May 2024
No other APPG Memberships
Catherine West Portrait
Catherine West
Officer
Labour - Hornsey and Friern Barnet
Joined: 8th November 2017
Departed: 30th May 2024
No other APPG Memberships
Marion Fellows Portrait
Marion Fellows
Officer
Scottish National Party - Former Member for Motherwell and Wishaw
Joined: 5th April 2023
Departed: 30th May 2024
No other APPG Memberships
Lord Patel Portrait
Lord Patel
Vice Chair
Crossbench - Life peer
Joined: 16th March 2016
Departed: 24th January 2024
No other APPG Memberships
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 Central and Headingley
Joined: 8th November 2017
Departed: 22nd February 2023
5 APPG Memberships
Fair Elections , Music , Net Zero , Ukraine , West Papua
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 - Former Member for Chelmsford
Joined: 8th November 2017
Departed: 13th February 2019
No other APPG Memberships
Baroness Hollins Portrait
Baroness Hollins
Officer
Crossbench - Life peer
Joined: 8th November 2017
Departed: 13th February 2019
1 APPG Membership
Down Syndrome
Lord Rogan Portrait
Lord Rogan
Officer
Ulster Unionist Party - Life peer
Joined: 8th November 2017
Departed: 13th February 2019
1 APPG Membership
Taiwan
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,

Email: No email supplied

Public Enquiry Point:

Rachel McEleny, 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://geneticalliance.org.uk/westminster-appg

Benefits in Kind
Date
4 Nov 2023
Source
Genetic Alliance UK
Description
Secretariat   From : 04/11/2023 To : 03/11/2024
Value
£9,001
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