Genetic Haemochromatosis APPG
First Registered: 13/02/2019 • Last updated on: 10/03/2021
Official Page
To raise awareness about Haemochromatosis (Iron Overload)
1. Genetic Haemochromatosis
03/07/2019 - Westminster Hall
2. Hansard_Speeches object (231120)
03/07/2019 - Speeches
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3. Hansard_Speeches object (231121)
03/07/2019 - Speeches
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4. Hansard_Speeches object (231122)
03/07/2019 - Speeches
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5. Hansard_Speeches object (231123)
03/07/2019 - Speeches
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1. 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
2. Gene Editing
30/01/2020 - Lords Chamber
1: for a start is an issue raised by two charities, Genetic Alliance UK and the Progress Educational Trust - Speech Link
2: embedded devices and more accurate information from genetic testing, their predisposition to disease—whether - Speech Link
3: secret, a taboo subject. However, as life-changing genetic medicine has developed, remarkable progress has - Speech Link
3. Insurance and Genetic Conditions
08/01/2018 - Commons Chamber
1: that both individuals currently suffering from genetic conditions and those with a high likelihood of - Speech Link
2: As the number of those with rare diseases and genetic conditions continues to increase and insurance - Speech Link
3: be able to access affordable insurance.Genetic testing will be one of the ways in which insurance - Speech Link
4. Genetically Modified Food
08/02/2021 - Lords Chamber
1: Minister has disagreed with the EU’s stance on genetic editing. I also note that the US has approved some - Speech Link
2: Does the Minister accept that gene editing and genetic modification are different technologies and that - Speech Link
3: gene editing and the distinction drawn between genetic modification and gene editing. Can the Minister - Speech Link
5. UK Rare Diseases Framework
24/03/2021 - Westminster Hall
1: conditions begin in childhood and are lifelong. Genetic Alliance UK estimates that rare diseases are responsible - Speech Link
2: best outcomes for people living with rare and genetic conditions in Wales.That should involve - Speech Link
3: regular genetic testing services. As a result, more families have been able to get the right genetic test - Speech Link
asked by: Angela Eagle
02/03/2020
... what steps his Department is taking to improve early diagnosis of genetic haemochromatosis. 2. Haemochromatosis: Diagnosis
asked by: John Hayes
25/09/2020
... what steps his Department is taking to improve early diagnosis for those suffering from haemochromatosis. 3. Haemochromatosis: Screening
asked by: John Hayes
02/03/2021
... what is the timetable for publication of the conclusions of the UK National Screening Committee’s review of screening for genetic haemochromatosis in adults. 4. Haemochromatosis: Screening
asked by: John Hayes
02/03/2021
... what assessment he has made of the potential merits of the UK National Screening Committee’s review of screening for genetic haemochromatosis in adults including an evaluation of recent medical research published since the committee last considered the matter in 2015. 5. Haemochromatosis: Screening
asked by: John Hayes
09/03/2021
... as a cost-effective means of identifying people at risk of iron overload from genetic haemochromatosis earlier in life.
4 Current APPG Officers
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John Hayes
Chair & Registered Contact
Conservative - South Holland and The Deepings
Joined: 24th February 2020Acquired Brain Injury , Craft , Funerals and Bereavement , Lebanon , Parks and Green Spaces , Skills and Employment , Taxis
Agroecology for Sustainable Food and Farming , Beer , Celtic Sea , Choice at the End of Life , Cleaning and Hygiene , Compassionate Politics , Energy Security , Fair Business Banking , Farming , Forestry and Tree Planting , France , Fuel Poverty and Energy Efficiency , Geographically Protected Foods , Infant Feeding and Inequalities , Marine Energy , Myalgic Encephalomyelitis (ME) , Netherlands , Reuniting Britain Post-Brexit , Thalidomide , University , Wales in the World , Western Sahara , Wood Panel Industry , Youth Employment
Anti-Corruption and Responsible Tax , Axial Spondyloarthritis , Black, Asian and Minority Ethnic Business Owners , Cancer , Creative Diversity , Crossrail , Diabetes , General Aviation , Intellectual Property , London's Planning and Built Environment , Music , Poland , Rohingya , Single Parent Families , Social Integration
Angus Brendan MacNeil
Officer
Scottish National Party - Na h-Eileanan an Iar
Joined: 24th February 2020British Museum , Carbon Capture, Utilisation and Storage , Caribbean , Channel Islands , Chile , Cuba , Denmark , Faroe Islands , Finland , Fisheries , Flags and Heraldry , Gibraltar , Holy See , Hydrogen , Iceland , Ireland and the Irish in Britain , Isle of Man (Manx) , Liechtenstein , Montserrat , Multiple Sclerosis , Net Zero , Norfolk Island , Norway , Pacific Islands , Philippines , Pitcairn Islands , Queen’s Platinum Jubilee 2022 , Road Freight and Logistics , Rowing , San Marino , Slovenia , Space , Sweden , Switzerland , UK Islands , Zoos and Aquariums
Contact Details
Show/HideRegistered Contact:
Sir John Hayes MP, House of Commons, London, SW1A 0AA. Tel: 020 7219 1389.
Email: hayesj@parliament.uk
Public Enquiry Point:
Vicki Lunn, Haemochromatosis UK, Henrith Business Centre, 3 Enterprise Way, Spalding PE11 3YR. Tel: 03030 401 101
Email: vicki@huk.org.uk
Benefits in Kind
Show/Hide16 Jan 2019
Haemochromatosis UK
Secretariat From : 16/01/2019 To : 15/01/2020
£3,001
No direct financial benefits are on record for the Genetic Haemochromatosis APPG
Former APPG Officers
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Mark Pawsey
Chair & Registered Contact
Conservative - Rugby
Joined: 13th February 2019Departed: 5th November 2019
District Councils , Funerals and Bereavement , Housing and Planning , Manufacturing , Microplastics , Motorcycle Speedway , Packaging Manufacturing Industry , Professional Sales , Rugby Union Football Club , Rwanda , Tidy Britain , Vaping
Julie Elliott
Vice Chair
Labour - Sunderland Central
Joined: 13th February 2019Departed: 5th November 2019
Broadband and Digital Communication , Channel 4 , Children's Media and the Arts , Digital Skills , Eating Disorders , Energy Costs , Energy Studies , Fit and Healthy Childhood , Human Microbiome , Infant Feeding and Inequalities , Key Cities , Northern Culture , Northern Powerhouse , Palestine , United Nations Women , Women in Parliament , Writers
Cheryl Gillan
Vice Chair
Conservative - Former Member for Chesham and Amersham
Joined: 13th February 2019Departed: 5th November 2019
Animal Welfare , Antibiotics , Autism , Bahá'í Faith , Cannabis: Harmful Effects on Developing Brains , Chalk Streams , Electric Vehicles , Environment , Epilepsy , Eye Health and Visual Impairment , Food Banks , Gardening and Horticulture , Golf , Hong Kong , Muscular Dystrophy , Rare, Genetic and Undiagnosed Conditions , Sepsis , Skin , Space , Women in Parliament , Woods and Trees
Lord Maude of Horsham
Vice Chair
Conservative - Life peer
Joined: 13th February 2019Departed: 5th November 2019
Alex Norris
Vice Chair
Labour (Co-op) - Nottingham North
Joined: 13th February 2019Departed: 5th November 2019
American Football , Bahrain , Baseball and Softball , Bingo , Child Contact Centres and Services , Darts , Deliberative Democracy , Democracy and Human Rights in the Gulf , Diversity and Inclusion in Science, Technology, Engineering and Maths , Domestic Violence and Abuse , East Midlands , Football Supporters , Hajj and Umrah , Human Trafficking and Modern Slavery , Kashmir , Parkrun , Sport, Modern Slavery and Human Rights , Surgical Mesh