Sickle Cell and Thalassaemia APPG
First Registered: 28/09/2017 • Last updated on: 10/03/2021
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.
1. Sickle cell and thalassaemia screening: information for fathers
10/01/2020 - Public Health England (PHE)
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Found:
Guidance
Sickle cell and thalassaemia screening: information for fathers
Leaflet
2. Sickle cell and thalassaemia screening: care pathway
29/03/2021 - Public Health England (PHE)
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Found: Sickle cell and thalassaemia screening: care pathway
This document describes the sickle cell
3. Sickle cell and thalassaemia screening: data report 2017 to 2018
02/03/2020 - Public Health England (PHE)
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Found: Sickle cell and thalassaemia screening: data report 2017 to 2018
Data for the NHS sickle cell
4. Baby at risk of having sickle cell disease: description in brief
12/01/2021 - Public Health England (PHE)
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Found: Guidance
Baby at risk of having sickle cell disease: description in brief
Information
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
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. 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
4. 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
5. Health: Stroke
23/07/2014 - Grand Committee
1: conditions—most commonly, congenital heart disease and sickle cell disease. Other underlying causes are infectious - Speech Link
2: Her view was that if they knew the child had sickle cell disease, or had had a fall or an RTA, they certainly - Speech Link
3: awareness of the characteristics and consequences of sickle cell disease and teachers should try to identify the - Speech Link
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. 2. 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. 3. Sickle Cell Diseases
asked by: Jonathan Ashworth
17/04/2018
... what recent estimate he has made of the annual cost to the NHS of treating sickle cell anaemia. 4. Army: Sickle Cell Diseases
asked by: John Spellar
20/01/2020
... what steps his Department is taking in response to the coroner's report of 30 December 2019 that linked the deaths of two Army recruits on military exercises to sickle cell anaemia. 5. Coronavirus: Sickle Cell Diseases
asked by: Dawn Butler
28/04/2020
... what assessment he has made of the effect of covid-19 on people with sickle cell disease.
10 Current APPG Officers
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Pat McFadden
Chair & Registered Contact
Labour - Wolverhampton South East
Joined: 28th September 2017Black Country , British Sikhs , Fourth Industrial Revolution , Ireland and the Irish in Britain
Christianity in the Holy Land , Dyslexia and Other Specific Learning Difficulties , Food Banks , Parkrun
Caribbean , Child and Youth Crime , Governance and Inclusive Leadership , Jamaica , Music , Pacific Islands , Race and Community , Unconscious Bias
Erasmus , Eye Health and Visual Impairment , Knife Crime and Violence Reduction , London , Nigeria
Alevis , Eritrea , Immigration Detention , Knife Crime and Violence Reduction , Kurdistan in Turkey and Syria , Malawi , Nigeria , Sudan and South Sudan , Tamils , Thalassaemia
Blood Cancer , Child Contact Centres and Services , Commercial Sexual Exploitation , Domestic Violence and Abuse , Muslim Women , Women and Work
Allergy , Bermuda , British Overseas Territories , Cannabis: Harmful Effects on Developing Brains , Caribbean , Dyspraxia , Endometriosis , Epilepsy , Fairs and Showgrounds , Fire Safety and Rescue , Food and Health , Funerals and Bereavement , Hairdressing, Barbering and Cosmetology , Human-Relevant Science , Japan , Learning Disability , Liechtenstein , Liver Health , Maldives , Maternity , Olympic and Paralympic Games , Parkinson's , Pharmacy , Philately , Philippines , Photography , Qatar , Queen’s Platinum Jubilee 2022 , Recovery from Addictions , San Marino , South East Asian Nations , Trailer and Towing Safety , Zoos and Aquariums
Contact Details
Show/HideRegistered Contact:
Pat McFadden MP, House of Commons, London, SW1A 0AA. Tel: 020 7219 4036.
Email: mcfaddenp@parliament.uk
Public Enquiry Point:
Adam Lloyd, Sickle Cell Society, 54 Station Road, London NW10 4UA. Tel: 020 8961 7795
Email: adam.lloyd@sicklecellsociety.org
Secretariat:
Sickle Cell Society acts as the group's secretariat. http://www.sicklecellsociety.org/
Group's Website:
Benefits in Kind
Show/Hide26 Feb 2020
Sickle Cell Society
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
£24,001
7 Sep 2018
Sickle Cell Society
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
£13,501
7 Sep 2018
Sickle Cell Society
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
£13,501
7 Sep 2018
UK Thalassaemia Society
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
£13,501
7 Sep 2017
Novartis
Secretariat From : 07/09/2017 To : 30/11/2017
£1,501
7 Sep 2017
Sickle Cell Society
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
£13,501
7 Sep 2017
UK Thalassaemia Society
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
£13,501
No direct financial benefits are on record for the Sickle Cell and Thalassaemia APPG
Former APPG Officers
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Pat McFadden
Chair & Registered Contact
Labour - Wolverhampton South East
Joined: 28th September 2017Departed: 5th November 2019
Black Country , British Sikhs , Fourth Industrial Revolution , Ireland and the Irish in Britain
Bambos Charalambous
Officer
Labour - Enfield, Southgate
Joined: 2nd January 2019Departed: 5th November 2019
Alevis , Attention Deficit Hyperactive Disorder , Breast Cancer , Cyprus , Equipment for Disabled Children , Future Generations , Green Deal Misselling , Missing Children and Adults , Social Media , Tamils , Thalassaemia
Diane Abbott
Chair & Registered Contact
Labour - Hackney North and Stoke Newington
Joined: 28th September 2017Departed: 19th June 2019
Commercial Sexual Exploitation