Register Of All-Party Parliamentary Groups [as at 2 June 2021] Rare, Genetic and Undiagnosed Conditions

Title

All-Party Parliamentary Group on Rare, Genetic and Undiagnosed Conditions

Purpose

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.

Category

Subject Group

 

Officers

Role

Name

Party

Chair & Registered Contact

Liz Twist

Labour

Vice Chair

Catherine West

Labour

Vice Chair

Lord Turnberg

Labour

Vice Chair

Baroness Neville-Jones

Conservative

Vice Chair

Lord Patel

Crossbench

Officer

Alex Sobel

Labour (Co-op)

 

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

 

 

Annual General Meeting

Date of most recent AGM in this Parliament

04/11/2020

Did the group publish an income and expenditure statement relating to the AGM above?

No

Reporting year

04 Nov to 03 Nov

Next reporting deadline

04/03/2022

 

Registrable benefits received by the group

 

Benefits In Kind

Source

Description

Value £s

In bands of £1,500

Received

Registered

Genetic Alliance UK

Secretariat

 

From : 04/11/2020

To : 03/11/2021

 

30,001-31,500

04/11/2020

08/12/2020