Genetic Haemochromatosis APPG

First Registered: 13/02/2019 • Last updated on: 29/12/2021

Official Page

To raise awareness about Haemochromatosis (Iron Overload)

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.


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Recent Documents related to Genetic Haemochromatosis

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

Latest Documents
Recent Speeches related to Genetic Haemochromatosis

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

Latest Speeches
Recent Questions related to Genetic Haemochromatosis
1. Haemochromatosis: Diagnosis
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.

Latest Questions
APPG Supplied Content

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4 Current APPG Officers
John Hayes Portrait
John Hayes
Chair & Registered Contact
Conservative - South Holland and The Deepings
Joined: 24th February 2020
Contact Details

Registered 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
Date
16 Jan 2019
Source
Haemochromatosis UK
Description
Secretariat   From : 16/01/2019 To : 15/01/2020
Value
£3,001

No direct financial benefits are on record for the Genetic Haemochromatosis APPG

Former APPG Officers
Mark Pawsey Portrait
Mark Pawsey
Chair & Registered Contact
Conservative - Rugby
Joined: 13th February 2019
Departed: 5th November 2019
Cheryl Gillan Portrait
Cheryl Gillan
Vice Chair
Conservative - Former Member for Chesham and Amersham
Joined: 13th February 2019
Departed: 5th November 2019
No other APPG Memberships
Lord Maude of Horsham Portrait
Lord Maude of Horsham
Vice Chair
Conservative - Life peer
Joined: 13th February 2019
Departed: 5th November 2019
No other APPG Memberships