Tuesday 10th March : this event has been postponed following the recent coronavirus/COVID-19 outbreak. Our Board of Trustees has issued this statement regarding the postponement. All previously purchased tickets will be refunded.

Draft Programme (subject to change)

9:00am Registration, tea and coffee

9:30am Welcome and Introduction
Neil McClements (Chief Executive, Haemochromatosis UK) will introduce our theme for the day and set the scene for an outstanding programme of presentations.

9.35am Panel discussion : “What is Genetic Haemochromatosis?”
In the light of recent medical discoveries, Dr Jeremy Shearman, Chair of our Clinical Advisory Panel and Professor Martin Johnson (Clinical Advisor) will chair this lively panel discussion with the trustees of Haemochromatosis UK. There will be a chance to meet your trustees, learn more about their background and quiz them on what GH means to them.

10:15am Presentation : “Haemochromatosis in all its guises”
Dr Steven Masson (Consultant Gastroenterologist, Freeman Hospital, Newcastle) is a highly regarded gastroenterologist, with a long-standing interest in genetic haemochromatosis. An experienced medical researcher as well as practising clinician, Dr Masson will explore some of the less common aspects of genetic haemochromatosis.

11.00am Presentation : “Haemochromatosis : new findings from UK Biobank participants”
Dr Janice Atkins (Research Fellow, Epidemiology & Public Health Group, University of Exeter Medical School) is an epidemiologist specialising in genetic haemochromatosis. Her team’s ground-breaking research over the past 18 months has been instrumental in improving our understanding of the prevalence of the condition. In this session, she will be revealing some of the latest findings from the UK Biobank, a £200 million genetic databank, for living well with haemochromatosis.

11:45 Refreshment break with tea, coffee and biscuits

12:05 Presentation : “Getting our voice heard in Westminster. How HUK members can shape the debate!”
Joshua Kaile is a Westminster insider, having worked for many years in advocacy and lobbying for a range of causes. Most recently, he has been working for David Lammy MP as parliamentary assistant. In this session, Joshua will reveal some of the surprisingly effective techniques for effective lobbying and advocacy of policymakers.

12:30 Presentation : “Engaging With the NHS If Things Go Wrong”
Tim Spring is a partner and Head of Healthcare at Moore Blatch. He helps clients navigate complex claims including those who have suffered serious physical or emotional trauma arising from medical negligence. Tim spent nearly a decade leading a team of lawyers investigating major clinical mishaps for the NHS. He was course director for the UK’s first university-accredited Diploma in Clinical Risk Management for healthcare professionals. He is a Royal Society of Medicine Patient Safety Section Council member and has a particular interest in ensuring that lessons are learned from individual patient experience within the NHS so that patient care is improved for all.

13:00 Lunch, and opportunity to talk to other attendees, our speakers, HUK trustees and our staff

13:55 Please reconvene for the afternoon session

14:00 Presentation : “Get involved : how you can help others through an advanced medical imaging clinical trial”
In this session, Dr John Connell (Senior Scientist, Perspectum Diagnostics) will demonstrate some of the advances in genetic haemochromatosis diagnostics. Haemochromatosis UK is a founding member of the National Consortium of Intelligent Medical Imaging (NCIMI), a £12 million InnovateUK funded initiative to improve healthcare through advanced medical imaging. John will explain how HUK members can get involved in the NCIMI clinical trials to improve our understanding of how best to apply advanced magnetic imaging to diagnose haemochromatosis early and painlessly, at scale.

14:45 Presentation : “What’s an expert patient, anyway?”
HUK member Phil Coathup shares his experiences of our expert patient programme which seeks to raise awareness of the symptoms and diagnosis of GH. Learn how you can get involved in helping our hard-working GPs help others affected by GH.

15:00 Presentation : “Improving genetic reports for people with haemochromatosis”

Earlier this year, Haemochromatosis UK and a team of researchers at University of Cambridge started a collaboration to improve the reporting of genetic results to people affected by haemochromatosis. Dr. Gabriel Recchia (Research Associate, Winton Centre for Risk and Evidence Communication, University of Cambridge) will share some of the early insights from this work and explain how members can get involved in this exciting patient-focussed research project.

15:30 Chair’s Closing Remarks
Ms Corrina Towers, Chair of HUK’s Board of Trustees provides a summary of the day’s events and shares some of the charity’s plans for 2020/2021.

15:45 Refreshment break with tea, coffee and biscuits

16:00 Departure of non-members

16:05 Annual General Meeting of Haemochromatosis UK members (separate agenda available to members)
All members of Haemochromatosis UK are invited to attend the charity’s Annual General Meeting which will include an overview of activities in 2019 and a review of the charity’s financial statements.

17:00 Close of event

Booking for this event has now closed.