All-Party Parliamentary Group on Genetic Haemochromatosis

July 7, 2021

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We recently attended the All-Party Parliamentary Group on Genetic Haemochromatosis.

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 on 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 in October 2018 and stimulated the interest of many MPs.

APPG on GH: June 2021 meeting

The latest meeting of the All-Party Parliamentary Group on Genetic Haemochromatosis was held by Zoom video conference on Wednesday 16th June 2021 at 2.30 pm.

The agenda is available for download here. The minutes, presentations and agenda of the previous meeting are available here.

This presentation was delivered to the meeting. It provides an update on the status of genetic screening in the UK, including initial findings of our charity’s family screening service and a new, cross-community population screening initiative in Derry-Londonderry throughout Summer 2021. Featuring Haemochromatosis UK Chief Executive, Neil McClements and APPG Chair Sir John Hayes CBE MP with contributions from APPG members.

NCIMI presentation

Dr Claire Bloomfield, NCIMI CEO, discussed practical steps to harness the value arising from health data.

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