Sickle Cell and Thalassaemia APPG

First Registered: 28/09/2017 • Last updated on: 17/11/2021

Official Page

To reduce the inequalities faced by sickle cell and thalassaemia patients in the UK. To improve standards of care and address other critical issues, as recommended by the key stakeholders.

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 Sickle Cell and Thalassaemia

1. Reporting newborn sickle cell results
24/11/2021 - NHS England
- View source

Found: Sheet1 Reporting newborn sickle cell screening results [Note: 'Thalassaemia' = β0, β+, δβ, γδβ and Hb

2. Sickle cell and thalassaemia screening: information for fathers
10/01/2020 - Public Health England (PHE)
- View source

Found: Guidance Sickle cell and thalassaemia screening: information for fathers Leaflet

3. Screening tests for you and your baby: easy guides
19/06/2020 - Public Health England (PHE)
- View source

Found: Screening for sickle cell disease and thalassaemiaAn easy guide to screening tests when you are pregnant

4. Sickle cell and thalassaemia screening: care pathway
29/03/2021 - Public Health England (PHE)
- View source

Found: Sickle cell and thalassaemia screening: care pathway This document describes the sickle cell

5. Family origin questionnaire: sickle cell and thalassaemia screening
01/10/2019 - Public Health England (PHE)
- View source

Found: Family origin questionnaire: sickle cell and thalassaemia screening - GOV.UK

Latest Documents
Recent Speeches related to Sickle Cell and Thalassaemia

1. BAME Blood, Stem Cell and Organ Donation
27/06/2018 - Westminster Hall

1: That this House has considered BAME blood, stem cell and organ donation.It is a pleasure to serve - Speech Link
2: chair of the all-party parliamentary group on stem cell transplantation. My hon. Friend makes a point that - Speech Link
3: ethnic backgrounds make up just 15% of the stem cell register, but campaigns such as Cure Kaiya, which - Speech Link

2. Sickle Cell Anaemia
10/12/2014 - Westminster Hall

1: this matter under your chairmanship, Mr Owen. Sickle cell anaemia affects an estimated 12,000 to 15,000 - Speech Link
2: thereabouts, but life expectancy for those with sickle cell anaemia is 40 to 50, which is better than it - Speech Link
3: past seven years or so with the Wolverhampton sickle cell care group. It provides hugely needed and valuable - Speech Link

3. Covid-19 Update
15/11/2021 - Commons Chamber

1: exposed by the covid pandemic. Today, the sickle cell and thalassaemia all-party parliamentary group, which - Speech Link

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

1: the all-party parliamentary group on sickle cell and thalassaemia, I know that this subject is of great - Speech Link
2: Member for Thirsk and Malton (Kevin Hollinrake); thalassaemia, raised by my hon. Friend the Member for Enfield - Speech Link
3: mentioned—motor neurone disease, muscular dystrophy, PKU, thalassaemia, neurofibromatosis and Batten disease —are all - Speech Link

5. NHS Long-Term Plan: Implementation
01/07/2019 - Commons Chamber

1: all-party parliamentary group on sickle cell and thalassaemia. Sickle cell is very much a hidden disability - Speech Link
2: crew, we attended a patient who suffered from sickle cell, and it was horrific to see the degree of pain - Speech Link

Latest Speeches
Recent Questions related to Sickle Cell and Thalassaemia
1. Sickle Cell Diseases
asked by: Alex Norris
08/06/2021
... what data his Department holds on the number of patients with sickle cell disease who access emergency care services during a vaso-occlusive crisis.

2. Sickle Cell Diseases
asked by: Alex Norris
10/06/2021
... what plans his Department has to help improve the (a) availability of and (b) access to innovative treatments for sickle cell disease.

3. Sickle Cell Diseases
asked by: Alex Norris
10/06/2021
... what recent assessment his Department has made of the (a) availability of and (b) access to innovative treatments for sickle cell disease in the NHS.

4. Sickle Cell Diseases
asked by: Diana Johnson
23/05/2019
... if he will provide updated estimates of the costs to the NHS of treating sickle cell anaemia in (a) England (b) each NHS England region and (c) each Clinical Commissioning Group area in each year since 2009-10.

5. Sickle Cell Diseases
asked by: Diana Johnson
23/05/2019
... (b) each NHS England region and (c) each Clinical Commissioning Group area in each year since 2009-10.

Latest Questions
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 Sickle Cell and Thalassaemia APPG and use this facility, click below

7 Current APPG Officers
Pat McFadden Portrait
Pat McFadden
Chair & Registered Contact
Labour - Wolverhampton South East
Joined: 28th September 2017
Janet Daby Portrait
Janet Daby
Vice Chair
Labour - Lewisham East
Joined: 31st July 2019
Baroness Benjamin Portrait
Baroness Benjamin
Officer
Liberal Democrat - Life peer
Joined: 28th September 2017
Greg Clark Portrait
Greg Clark
Officer
Conservative - Tunbridge Wells
Joined: 17th November 2021
4 APPG Memberships
Chemical Industry , Colombia , Italy , Motor
Contact Details

Registered Contact:

Pat McFadden MP, House of Commons, London, SW1A 0AA. Tel: 020 7219 4036.

Email: mcfaddenp@parliament.uk

Public Enquiry Point:

Seyi Afolabi, Sickle Cell Society, 54 Station Road, London NW10 4UA. Tel: 020 8961 7795

Email: seyi.afolabi@sicklecellsociety.org

Secretariat:

Sickle Cell Society acts as the group's secretariat. http://www.sicklecellsociety.org/

Group's Website:

https://www.sicklecellsociety.org/sctappg/

Benefits in Kind
Date
26 Feb 2021
Source
Sickle Cell Society
Description
Sickle Cell Society is part-funded by Novartis and Bluebird Bio to act as the group's secretariat   From : 26/02/2021 To : 25/02/2022
Value
£33,001
Date
26 Feb 2020
Source
Sickle Cell Society
Description
Sickle Cell Society is part-funded by Novartis and Bluebird Bio to act as the group's secretariat   From : 26/02/2020 To : 25/02/2021
Value
£24,001
Date
7 Sep 2018
Source
Sickle Cell Society
Description
Sickle Cell Society is part-funded by Novartis and Bluebird Bio to act as the group's secretariat   From : 07/09/2018 To : 06/09/2019
Value
£13,501
Date
7 Sep 2018
Source
Sickle Cell Society
Description
Sickle Cell Society is part-funded by Novartis and Bluebird Bio to act as the group's (joint) secretariat   From : 07/09/2018 To : 06/09/2019
Value
£13,501
Date
7 Sep 2018
Source
UK Thalassaemia Society
Description
UK Thalassaemia Society is funded by Novartis and Bluebird Bio to act as the group's (joint) secretariat   From : 07/09/2018 To : 06/09/2019
Value
£13,501
Date
7 Sep 2017
Source
Novartis
Description
Secretariat   From : 07/09/2017 To : 30/11/2017
Value
£1,501
Date
7 Sep 2017
Source
Sickle Cell Society
Description
Sickle Cell Society is part-funded by Novartis and Bluebird Bio to act as the group's (joint) secretariat   From : 07/09/2017 To : 06/09/2018
Value
£13,501
Date
7 Sep 2017
Source
UK Thalassaemia Society
Description
UK Thalassaemia Society is funded by Novartis and Bluebird Bio to act as the group's (joint) secretariat   From : 07/09/2017 To : 06/09/2018
Value
£13,501

No direct financial benefits are on record for the Sickle Cell and Thalassaemia APPG

Former APPG Officers
David Amess Portrait
David Amess
Officer
Conservative - Former Member for Southend West
Joined: 28th September 2017
Departed: 6th October 2021
No other APPG Memberships
Dawn Butler Portrait
Dawn Butler
Officer
Labour - Brent Central
Joined: 28th September 2017
Departed: 2nd June 2021
Helen Grant Portrait
Helen Grant
Officer
Conservative - Maidstone and The Weald
Joined: 20th May 2020
Departed: 2nd June 2021
Pat McFadden Portrait
Pat McFadden
Chair & Registered Contact
Labour - Wolverhampton South East
Joined: 28th September 2017
Departed: 5th November 2019
Bambos Charalambous Portrait
Bambos Charalambous
Officer
Labour - Enfield, Southgate
Joined: 2nd January 2019
Departed: 5th November 2019
Diane Abbott Portrait
Diane Abbott
Chair & Registered Contact
Labour - Hackney North and Stoke Newington
Joined: 28th September 2017
Departed: 19th June 2019