Rare, Genetic and Undiagnosed Conditions APPG

First Registered: 16/03/2016 • Last updated on: 10/03/2021

Official Page

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.


This content was generated for your convenience by Parallel Parliament and does not form part of the official record.
Recent Documents related to Rare, Genetic and Undiagnosed Conditions

1. Rare, Genetic and Undiagnosed Conditions
16/03/2016 - APPGs

Found: increase awareness in Parliament of rare, genetic and undiagnosed conditions and help to ensure that patients

2. Genetic Alliance UK - written evidence
04/03/2019 - Inquiry: Availability of Orkambi on the NHS - Health and Social Care Committee
- View source

Found: Written evidence - Genetic Alliance UK ORK0279Written evidence from Genetic Alliance UKExecutive SummaryAccess

3. Implementing the UK Strategy for Rare Diseases
24/03/2017 - Parliamentary Research

Found: 24 March 2017 Implementing the UK Strategy for Rare Diseases By Sarah Barber Jacqueline Baker A debate

4. first progress report
28/02/2018 - Department of Health and Social Care
- View source

Found: for patients with rare diseases: Implementing a strategy A report from the UK Rare Disease Forum 3Contents

5. National Society for Phenylketonuria - written evidence
04/03/2019 - Inquiry: Availability of Orkambi on the NHS - Health and Social Care Committee
- View source

Found: issues which affect access to treatment. PKU is a rare genetic condition with a prevalence of approximately

Latest Documents
Recent Speeches related to Rare, Genetic and Undiagnosed Conditions

1. UK Rare Diseases Framework
24/03/2021 - Westminster Hall

1: House has considered the implementation of the UK Rare Diseases Framework.It is a pleasure to serve - Speech Link

2. Rare Diseases Strategy
28/03/2017 - Westminster Hall

1: has considered implementing the UK Strategy for Rare Diseases.It is a pleasure to serve under - Speech Link

3. Genetic Haemochromatosis
03/07/2019 - Westminster Hall

1: debate on genetic haemochromatosis. I chair the all-party parliamentary group for genetic haemochromatosis - Speech Link
2: on to some of the debilitating consequences of genetic haemochromatosis, which include arthritis, joint - Speech Link
3: Celtic origin leads to some people referring to genetic haemochromatosis as the Celtic curse, a term that - Speech Link

4. Phenylketonuria and Kuvan
22/03/2018 - Commons Chamber

1: co-chair the all-party group on rare, genetic and undiagnosed conditions, but I raise this issue primarily - Speech Link
2: approach new medicines and treatments, especially for rare diseases. Britain is a world leader in science, - Speech Link

5. Oral Answers to Questions
07/05/2019 - Commons Chamber

1: couple of weeks ago, so that those with acute conditions and with clinical support for using medicinal - Speech Link
2: taking to increase awareness of rare, genetic and undiagnosed conditions in mental health services. [910729] - Speech Link
3: being taken through the implementation of the UK rare disease strategy. The Department published an update - Speech Link

Latest Speeches
Recent Questions related to Rare, Genetic and Undiagnosed Conditions
1. Genetic Engineering
asked by: Lord Hunt of Kings Heath
20/08/2020
...To ask Her Majesty's Government what assessment has been made by NICE of the suitability of applying the 1.5 per cent non-reference discount rate for one time gene therapies that offer long-term health benefits.

2. Genetic Engineering
asked by: Jim Shannon
27/01/2021
... what steps are being taken through the NICE health technology evaluation methods review to assess the effect of the (a) reference (b) non-reference discount rate on gene therapies.

3. Genetic Engineering
asked by: Jim Shannon
17/12/2020
... what steps the Government is taking to ensure timely access to gene therapies for eligible patients.

4. Genetic Engineering
asked by: Jim Shannon
17/12/2020
... what steps the Government taking to ensure that (a) NICE and (b) NHS England processes are (i) evaluated and (ii) adapted to assess the (A) cost-effectiveness and (B) accessibility of one-time gene therapies.

5. Genetic Engineering
asked by: Jim Shannon
17/12/2020
... what assessment his Department has made of the potential for gene therapies to reduce the treatment burden on hospital capacity.

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

Benefits in Kind
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
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
1 APPG Membership
Energy Studies
Baroness Hollins Portrait
Baroness Hollins
Officer
Crossbench - Life peer
Joined: 8th November 2017
Departed: 13th February 2019
Lord Rogan Portrait
Lord Rogan
Officer
Ulster Unionist Party - Life peer
Joined: 8th November 2017
Departed: 13th February 2019
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