Obituaries: Edmund Lynch & Janet Fernau

Edmund Lynch, Friend and Member of the Irish Haemochromatosis Association; Producer, Director, Activist & Historian

Our friend and long-standing member, Edmund Lynch sadly passed away in October. Edmund was a former producer for RTE and an activist, historian and broadcaster and was a trailblazing Irish LGBTQ+ activist and oral historian. He was a very loyal member of our Association over many years and would never miss an AGM or patient information event, as he was passionate about raising more awareness of haemochromatosis in Ireland. On behalf of all our members and the voluntary board of the Irish Haemochromatosis Association, we would like to extend our sincere condolences to Edmund’s family. Ar dheis Dé go raibh a anam.

Janet Fernau, Founder of the UK Haemochromatosis Society

In 1990 Janet Fernau, together with her husband Guy, founded the UK Haemochromatosis Society (HUK) and worked tirelessly over 25 years as to raise awareness of haemochromatosis. Janet was an incredible support and friend to Margaret Mullett and the Board of the Irish Haemochromatosis Association over many years and for that we are eternally grateful. Those who remember Janet, will have known her as a true friend of the Irish haemochromatosis community.

IHA News and Events

Damian Boylan is Cork’s New Lord Mayor

We would like to extend our sincere congratulations to Damian Boylan, friend, advocate and member of the Irish Haemochromatosis Association, who has just been elected as the new Lord Mayor of Cork! Damian has been an amazing public representative for several years and has made it his mission to raise awareness of haemochromatosis, having been diagnosed himself 23 years ago.

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‘We are Family’ HUK Haemochromatosis Event Belfast

Haemochromatosis UK are hosting a haemochromatosis in-person event in Belfast on the 7th October 2026. Everyone is welcome to attend. Local, national, and international standard experts will deliver a dedicated programme of talks in the beautiful Titanic Hotel. This conference is relevant to anyone affected across the UK and Ireland – even further afield. 

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World Haemochromatosis Awareness Week, 1-7th June 2026

World Haemochromatosis Awareness Week launches!! This is the most important time of the year, when we urge everyone in Ireland to recognise the symptoms of the nation’s ‘Hidden Condition’, often called the ‘Celtic Gene’. Sister and brother, Emilia and Teddy Eustace joined Alice Kelly, Anna McCarthy and Brian Keegan to launch the week.

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