Genetic Haemochromatosis APPG
First Registered: 13/02/2019 • Last updated on: 29/12/2021
Official Page
To raise awareness about Haemochromatosis (Iron Overload)
1. Say no to blanket fortification of UK / imported foods with iron.
10/01/2022 - Petitions
Found: Haemochromatosis has been diagnosed in 5,000 people in the UK but 250,000+ don't know they have it.
2. Genetic Haemochromatosis
13/02/2019 - APPGs
Found: To raise awareness about Haemochromatosis (Iron Overload)
3. UK NSC meeting March 2021
20/10/2021 - UK National Screening Committee
- View source
Found: for:
stomach cancer
hearing loss
hereditary haemochromatosis
thrombophilia
fetal presentation
adolescent
4. Leaflet on Access and Benefit Sharing in the UK
31/03/2021 - Department for Environment, Food and Rural Affairs
- View source
Found: Nagoya Protocol?
The Nagoya Protocol on Access to Genetic Resources
and the Fair and Equitable Sharing of
5. Leaflet on Access and Benefit Sharing in the UK
31/03/2021 - Office for Product Safety and Standards
- View source
Found: Nagoya Protocol?
The Nagoya Protocol on Access to Genetic Resources
and the Fair and Equitable Sharing of
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: some of the debilitating consequences of genetic haemochromatosis, which include arthritis, joint pain, - Speech Link
3: constituent Roger Keyte, who is a trustee of Haemochromatosis UK. He has done a good job educating me. I - 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. Children with Genetic Conditions: Specialist Support
15/06/2021 - Lords Chamber
1: with (1) 22q11 deletion syndrome, and (2) other genetic conditions, receive specialist support to address - Speech Link
2: committed to help all children, including those with genetic disorders, to recover from the impact of lost learning - Speech Link
3: greatly help those with often very debilitating genetic conditions. Can my noble friend the Minister advise - Speech Link
4. 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 data sharing - Speech Link
3: regular genetic testing services. As a result, more families have been able to get the right genetic test - Speech Link
5. 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
asked by: John Hayes
25/09/2020
... what steps his Department is taking to improve early diagnosis for those suffering from haemochromatosis. 2. 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. 3. 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. 4. 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. 5. Haemochromatosis: Diagnosis
asked by: Angela Eagle
02/03/2020
... what steps his Department is taking to improve early diagnosis of genetic haemochromatosis.
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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 , Dying Well , Funerals and Bereavement , Independent Education , Lebanon , Parks and Green Spaces , Publishing , Skills, Careers and Employment , Taxis
Agroecology for Sustainable Food and Farming , Beer , Celtic Sea , Choice at the End of Life , Cleaning and Hygiene , Côte d’Ivoire , Democracy and Human Rights in the Gulf , Fair Business Banking , Farming , Forestry and Tree Planting , France , Fuel Poverty and Energy Efficiency , Geographically Protected Foods , Hospitality, Events and Major Food and Drink Businesses in Wales , Infant Feeding and Inequalities , International Students , Marine Energy , Netherlands , Sudan and South Sudan , Sustainable Finance , Sustainable Resource , Thalidomide , University , Uplands and Hill Farming , Wales in the World , Western Sahara , White Ribbon UK , Wood Panel Industry
Animal Welfare , Antisemitism , Broadband and Digital Communication , Coronavirus , Drugs, Alcohol and Justice , Fisheries , Future Generations , Green New Deal , Heritage Rail , Hospitality, Events and Major Food and Drink Businesses in Wales , Marine Energy , Mining and Quarrying , Nuclear Energy , Ocean Conservation , Outdoor Learning , Perpetrators of Domestic Abuse , Small Modular Reactors , State Pension Inequality for Women , Stroke , United Nations Women , Votes at 16 , Women and Work
Acquired Brain Injury , Building Communities , Carbon Monoxide , Customer Service , Future of Retail , Housing and Social Mobility , Microplastics , Muscular Dystrophy , Net Zero , Parks and Green Spaces , Rail in the North , Rare, Genetic and Undiagnosed Conditions , Respiratory Health , Suicide and Self-Harm Prevention , Tackling Loneliness and Connected Communities , Usher Syndrome , Valproate and other Anti-Epileptic Drugs in Pregnancy , Water , Women's Health
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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Rupa Huq
Officer
Labour - Ealing Central and Acton
Joined: 24th February 2020Departed: 2nd June 2021
Anti-Corruption and Responsible Tax , Bangladesh , CBD (Cannabidiol) Products , Creative Diversity , Crossrail , Gasworks Redevelopment , General Aviation , London , London as a Global City , London's Planning and Built Environment , Music , Poland , Single Parent Families , Social Integration , Tackling Loneliness and Connected Communities
Angus Brendan MacNeil
Officer
Scottish National Party - Na h-Eileanan an Iar
Joined: 24th February 2020Departed: 2nd June 2021
British Museum , Carbon Capture, Utilisation and Storage , Caribbean , Cayman Islands , Channel Islands , Chile , Cuba , Denmark , Faroe Islands , Finland , Fisheries , Flags and Heraldry , Gibraltar , Holy See , Hydrogen , Iceland , Isle of Man (Manx) , Liechtenstein , Montserrat , Multiple Sclerosis , Net Zero , Norfolk Island , Norway , Pacific Islands , Pitcairn Islands , Queen’s Platinum Jubilee 2022 , Road Freight and Logistics , Rowing , San Marino , Slovenia , Space , Sweden , Switzerland , UK Islands , Zoos and Aquariums
Mark Pawsey
Chair & Registered Contact
Conservative - Rugby
Joined: 13th February 2019Departed: 5th November 2019
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 , Data Poverty , Digital Skills , Eating Disorders , Energy Costs , Energy Studies , Fit and Healthy Childhood , Human Microbiome , Infant Feeding and Inequalities , Kidney , Libya , Northern Culture , Northern Powerhouse , Palestine , United Nations Women , Visual Arts , Women in Parliament , Writers
Cheryl Gillan
Vice Chair
Conservative - Former Member for Chesham and Amersham
Joined: 13th February 2019Departed: 5th November 2019
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 , Bingo , Child Contact Centres and Services , Darts , Deliberative Democracy , Diversity and Inclusion in Science, Technology, Engineering and Maths , Domestic Violence and Abuse , Football Supporters , Human Trafficking and Modern Slavery , Kashmir , Parkrun , Retail Crime , Running , Sport, Modern Slavery and Human Rights , Usher Syndrome