Rare, Genetic and Undiagnosed Conditions APPG

First Registered: 16/03/2016 • Last updated on: 15/06/2022

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


Reticulating Splines
APPG Supplied Content

APPGs can register with Parallel Parliament and submit files and articles to be placed here.

Parallel Parliament offers the facility for APPGs to submit written content and files, which are made available through this page.

Submitters can draft and edit publications, and either release them on demand, or schedule release for a future date.

Both text content and attached files submitted through this facility is indexed by our website, and made available through both the search function and relevant e-mail alerts. Any of our users registered for an alert which matches your content, will receive a link making them aware of its publication.

If you wish to register as an authorised representative of the Rare, Genetic and Undiagnosed Conditions APPG and use this facility, click below

5 Current APPG Officers
Baroness Neville-Jones Portrait
Baroness Neville-Jones
Vice Chair
Conservative - Life peer
Joined: 16th March 2016
Lord Turnberg Portrait
Lord Turnberg
Vice Chair
Labour - Life peer
Joined: 16th March 2016
2 APPG Memberships
Israel , Medical Research
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:

Farhana Ali, 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

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

Former APPG Officers
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
No other APPG Memberships
Lord Rogan Portrait
Lord Rogan
Officer
Ulster Unionist Party - Life peer
Joined: 8th November 2017
Departed: 13th February 2019
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