Each year we run The Genetic Haemochromatosis Patients’ Conference for patients, family members, and others with an interest in the condition. This is an opportunity to hear from renowned medical and other speakers, take part in wide-ranging question-and-answer sessions, and to meet and talk to others who are affected by GH. The formal AGM will follow immediately after the event
The Genetic Haemochromatosis Patients’ Conference 2019
Venue: Novotel Coventry M6/J3 Hotel, Wilsons Lane, Coventry, CV6 6HL
Saturday 13 April 2019
The conference returned to our midlands home and our theme this year was The Future for Haemochromatosis
|08:45||Registration, tea and coffee|
|09:20||Welcome and Introduction
Mr David Head MBA
Chief Executive, Haemochromatosis UK
Ms Corrina Towers
Chair, Haemochromatosis UK
“The future for haemochromatosis”
David and Corrina introduced our theme for the day and set the scene for an outstanding programme of presentations.
Professor Edward (Ted) Fitzsimons
Consultant Haematologist, University of Glasgow
“The future for haemochromatosis patient pathways”
Professor Fitzsimons is a respected clinician and researcher. He co-authored the new clinical guidelines for the treatment of iron overload and is a medical adviser to the All Party Parliamentary Group for Genetic Haemochromatosis. He presented an overview of haemochromatosis and discussed how the new clinical guidelines are being adopted and will improve patient pathways and outcomes.
Dr Patrick Kiely
Consultant Rheumatologist, St George’s Healthcare Trust
“Haemochromatosis Arthropathy: What current conundrums mean for future research”
Dr Kiely is a leading expert on haemochromatosis joint pain and has recently published a research paper entitled “Haemochromatosis arthropathy – a
conundrum of the Celtic curse” He discussed the specific form of arthritis that affects haemochromatosis patients and what research can tell us about the future of diagnosis and treatment.
|11:00||Refreshment break with tea, coffee and biscuits|
Professor David Melzer
Professor of Epidemiology and Public Health, University of Exeter Medical School.
“New research: Haemochromatosis is linked to more disease than previously thought”
Prof. Melzer et al, recently published ground breaking research into haemochromatosis and its links with other conditions. The UK Biobank study of 500,000 volunteers provided a world leading opportunity to study ageing. Linking volunteers’ anonymised genetic data to NHS hospital records provided a unique opportunity for health research.
Professor Edward (Ted) Fitzsimons, Dr Patrick Kiely and Professor David Melzer
“Question Time: What does the future hold?”
Our three eminent speakers took questions from the audience about their work, and their vision of its impact on future clinical practice.
|12:45||Lunch, and opportunity to talk to other patients, our speakers, HUK trustees and our staff|
|13:45||Reconvened for the afternoon session|
Mr Neil McClements.
Haemochromatosis UK Trustee and Patient Safety Advocate.
Mrs Yvonne Francis.
Clinical Nurse Specialist and Venesection Expert from Guys and St Thomas’s NHS foundation Trust.
Mrs Gerri Mortimore.
Lecturer at The University of Derby, School of Nursing and Professional Practice.
“Applying best practice: The venesection clinics of the future”
Our three venesection experts will took questions from the host about the ongoing venesection best practise project and where treatment of haemochromatosis is headed in the future.
NCIMI– The future of haemochromatosis diagnosis using Artificial Intelligence
Mr David Head
Chief Executive of Haemochromatosis UK
“And our survey says…”
David reported on the recent patient survey and the work being done on the basis of the results.
Mr Mark Pawsey
MP and Chair of the APPG for Genetic Haemochromatosis.
“The impact of the APPG on the future of patient care”
Mr Pawsey updated the audience on the current work going on in parliament to improve outcomes for haemochromatosis patients.
|15:30||Refreshment break with tea, coffee and biscuits|
Dr Roseanna Brady
Health Psychologist and Haemochromatosis UK Trustee.
“It’s health Jim, but not as we know it”
Roseanna talked about the role of psychology in physical health and illness, and its influence on health policy in regard to long-term physical health conditions including haemochromatosis.
Ms Corrina Towers
Chair of Haemochromatosis UK
“The Future of Haemochromatosis UK”
Our chair will discussed the ongoing work of HUK and what’s next for the organisation.
|16:55||Chairs’ Closing Remarks
Ms Corrina Towers
|17:05||Comfort break and departure of non-members|
|17:20||Annual General Meeting of Haemochromatosis UK members (separate agenda available to members)|
|18:00||Close of event|
This event has now ended, please look on our website and on this page for further updates on our future conferences.
Click here for a report from the 2018 event in Paddington, London.
Click here for a report from the 2017 event in Birmingham.
“…Please pass on my thanks to you and all the staff who organised the conference on the 14th April. I thoroughly enjoyed the day – it was so well organised and informative and great to meet so many people to share our experiences. The hotel was a great venue and the refreshments and lunch were amazing. Again thank everyone who obviously worked and planned so hard to achieve such an outstanding day…”
Sue, delegate 2018
“…what a great day on Saturday. It ran like clockwork thanks to your hard work and organisation. I thoroughly enjoyed the day. It was so informative and interesting and the day passed very quickly. Every year I learn more and my understanding increases so that I know a little more. All the speakers were good and each one had a different slant on the subject. Have a well earned rest…”
“…congratulations to you on an excellent conference – one of the best I have attended and well organised … The speakers were excellent and very informative and Manchester did you proud … Well done to you and looking forward to the next one…”
“…just to say how wonderful the conference was on Sat! … all the speakers were really good, and very approachable and open. A big Thank You to your team for putting it together and making it such a success! The society will go from strength to strength…”