What is the APPG?
All-Party Parliamentary Groups (APPGs) are informal cross-party groups. They have no official status within Parliament but can, however, be very influential in bringing matters to the attention of parliament and ministers, and encouraging action by other bodies. They are run by and for Members of the Commons and Lords, though many choose to involve individuals and organisations from outside Parliament in their administration and activities.
This APPG for Genetic Haemochromatosis (Iron Overload) was created in January 2019 following a report into the impact of iron overload commissioned and published by the charity Haemochromatosis UK. The report was launched at an event at The House of Commons and stimulated the interest of many MPs.
Members of the APPG
The group is chaired by Mr Mark Pawsey MP (pictured left). Other members and external contributors are:
|Chair||Mr Mark Pawsey MP||Rugby & Bulkington||Conservative|
|Vice Chair||Mrs Julie Elliott MP||Sunderland Central||Labour|
|Vice Chair||Dame Cheryl Gillan MP||Chesham and Amersham||Conservative|
|Vice Chair||Mr Ben Lake MP||Ceredigion||Plaid Cymru|
|Vice Chair||Lord Francis Maude||Rt Hon Lord Maude of Horsham||House of Lords|
|Vice Chair||Mr Alex Norris MP||Nottingham North||Labour & Co-op|
|Member||Mr Tim Farron MP||Westmorland and Lonsdale||Lib Dem|
|Member||Mr Gavin Newlands MP||Paisley & Renfrewshire North||SNP|
|Member||Mrs Pauline Latham MP||Mid Derbyshire||Conservative|
|Member||Mrs Alison Thewliss MP||Glasgow Central||SNP|
|Member||Mr Martin Docherty-Hughes MP||West Dunbartonshire||SNP|
|6 further members||Awaiting confirmation after inaugural meeting|
|Medical Adviser||Dr Roseanna Brady||Consultant Health Psychologist
NHS and private practice
|Medical Adviser||Prof Edward Fitzsimons||Consultant Haematologist
University of Glasgow
|Medical Adviser||Dr Jeremy Shearman||Consultant Hepatologist
|Medical Adviser||Dr Patrick Kiely||Consultant Rheumatologist
St George’s Hospital, London
|Medical Adviser||Prof Janusz Jankowski||Consultant Clinical Adviser
National Institute for Health and Care Excellence
|Medical Adviser||Dr Noel McElearney||Occupational Health Physician
Health Management Ltd
|Secretariat||Mr David Head||Haemochromatosis UK||N/A|
|Lead Patient Representative||Mrs Michelle Weerasekera||Haemochromatosis UK||N/A|
What is haemochromatosis?
Haemochromatosis is a genetic condition that results in continual build up of iron in the body, until it reaches toxic levels. At this point it starts to affect many of our systems, including the liver, heart, endocrine system, and joints. Potentially fatal, it causes a multitude of chronic, painful and debilitating medical problems, many of which result in significant impact and expense for our healthcare services. Ironically, haemochromatosis should be very easily diagnosed and easily treated. There is a general acknowledgment that haemochromatosis is under-diagnosed, under-researched, misunderstood and under-estimated in its impact. The APPG works closely with Haemochromatosis UK, the patient organisation for people affected, to address these and related issues.
What are the APPGs priorities and what is its remit?
The APPG has agreed its remit (terms of reference) and these can be viewed here. Priorities for the group will be agreed from meeting to meeting and minutes of the meetings are available from this link. Recent articles about the work of the APPG will be featured on the home page of this website.