Genetic, Rare and Undiagnosed Conditions APPG

First Registered: 12/02/2025 • Last updated on: 13/04/2026

Note: This APPG was last registered on 13th April 2026. The APPG was not registered in the latest release of the 18th May 2026 and may be defunct.

To increase awareness in parliament of genetic, rare 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
Former APPG Officers
Peter Dowd Portrait
Peter Dowd
Chair & Registered Contact
Labour - Bootle
Joined: 12th February 2025
Departed: 13th April 2026
5 APPG Officer Positions
Children who need Palliative Care , Falkland Islands , Italy , Liverpool City Region , UK Spirits

No other APPG Memberships

Baroness Neville-Jones Portrait
Baroness Neville-Jones
Vice Chair
Conservative - Life peer
Joined: 12th February 2025
Departed: 13th April 2026
1 APPG Officer Position
Czechia

No other APPG Memberships

Alison Hume Portrait
Alison Hume
Officer
Labour - Scarborough and Whitby
Joined: 12th February 2025
Departed: 13th April 2026
3 APPG Officer Positions
Autism , Coastal Communities , Yorkshire and Northern Lincolnshire

No other APPG Memberships

Contact Details

Registered Contact:

Peter Dowd MP, House of Commons, London, SW1A 0AA. Tel: 020 7219 8671.

Email: peter.dowd.mp@parliament.uk

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

Date
17 Dec 2024
Source
Genetic Alliance UK
Description
Secretariat   From : 17/12/2024 To : 16/12/2025
Value
£7,501
Date
17 Dec 2024
Source
Genetic Alliance UK
Description
Secretariat   From: 17/12/2024 To: 16/12/2025
Value
£7,501

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