Register Of All-Party Parliamentary Groups [as at 21 November 2018] 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

Stephen Twigg

Labour (Co-op)

Co-Chair

Vicky Ford

Conservative

Vice Chair

Dame Cheryl Gillan

Conservative

Vice Chair

Lord Turnberg

Labour

Vice Chair

Baroness Neville-Jones

Conservative

Vice Chair

Lord Patel

Crossbench

Officer

Catherine West

Labour

Officer

Alex Sobel

Labour (Co-op)

Officer

Baroness Hollins

Crossbench

Officer

Lord Rogan

Ulster Unionist Party

Officer

Norman Lamb

Liberal Democrat

 

Contact Details

Registered Contact:

Stephen Twigg MP, House of Commons, London, SW1A 0AA. Tel: 020 7219 7103. Email: stephen.twigg.mp@parliament.uk.

 

Public Enquiry Point:

Farhana Ali, Genetic Alliance UK, Level 3, Barclay House, 37 Queen Street, London WC1N 3BH. Tel: 020 7831 0883. Email: farhana@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

11/10/2017

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

No

Reporting year

11 Oct to 10 Oct

Next reporting deadline

11/02/2019

 

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 : 11/10/2017

To : 10/10/2018

 

30,001-31,500

11/10/2017

31/10/2017