Irish Haemochromatosis Association CLG

Irish Haemochromatosis Association CLG The Irish Haemochromatosis Association is a registered charity whose main aim is to promote awareness The Irish Haemochromatosis Association C.L.G.

(IHA) is a registered charity who's main aim is to promote awareness of haemochromatosis (HH). All material provided is for general information and does not constitute medical advice. Any medical concerns should be addressed by your doctor. Disclaimer: The IHA believes the information on Facebook is accurate, but little is known about many aspects of HH and research is progressively revealing new

information on the subject. Accordingly, any person using Facebook does so, on the condition that he or she thereby indemnifies and keeps indemnified the IHA against action or any claim of any nature whatsoever arising directly or indirectly from the use of information contained herein.

Haemochromatosis 'In the Blood' article featured in Ireland's RTE Guide this week! Thanks to Alice Kelly, entrepeneur, b...
14/08/2026

Haemochromatosis 'In the Blood' article featured in Ireland's RTE Guide this week!

Thanks to Alice Kelly, entrepeneur, baker and now debut author, who helped launch World Haemochromatosis Awareness Week, and the many other ambassadors and volunteers, we have collectively left no stone unturned in promoting education and awareness of the most common genetic disorder in the country.

Read Alice's interview with Stephen Meyler Guide

Super thanks Alice The From Scratch Bakery! 👩‍🍳👩‍🍳👩‍🍳👩‍🍳

07/08/2026

The HSE Mid West Hepatitis C Nursing Team and HSE Mid West Addiction Service is delighted to support the "Listen to Your Liver" mobile roadshow, organised by the Liver Ireland Support Network (LISN) in partnership with the Irish Liver Foundation.

📅 Date: Saturday, 8 August 2026
📍 Location: Bedford Row, Limerick
🕙 Time: 10:00 a.m. – 4:00 p.m.

Members of the public are invited to drop in for a free FibroScan - a quick, painless, and non-invasive test that assesses liver health.

Many liver conditions develop silently, often without symptoms in the early stages. Early detection can help identify liver disease sooner, enabling timely advice, treatment, and lifestyle changes that can improve long-term health.

Whether you have risk factors for liver disease or simply want to know more about your liver health, this is an excellent opportunity to speak with healthcare professionals and learn how to keep your liver healthy.

Tickets are selling fast for Haemochromatosis UK's upcoming 'We are Family' event. HUK is inviting patients and their fa...
07/08/2026

Tickets are selling fast for Haemochromatosis UK's upcoming 'We are Family' event. HUK is inviting patients and their families from all over Ireland to attend this event taking place on Wednesday, 7th October 2026 in the Titanic Hotel, Belfast.

Representatives from the Irish Haemochromatosis Association will also attend. We hope you can join us for what will be a fantastic programme. We look forward to seeing you there!

You can book your ticket through the HUK website here - https://www.haemochromatosis.org.uk/Event/we-are-family-haemochromatosis-uk-event-for-patients-and-experts-hold-the-date

For Instagram followers, link to purchase tickets and for more information is in Bio on our charity Instagram page

Congratulations to Damian Boylan, member, friend and advocate for haemochromatosis patients, who was elected as the new ...
28/07/2026

Congratulations to Damian Boylan, member, friend and advocate for haemochromatosis patients, who was elected as the new Lord Mayor of Cork and to Damian's wife Brenda.

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.

You can read Damian's story and his personal journey through haemochromatosis and his path to Lord Mayor below! Sincere thanks to Damian for being such a wonderful friend and supporter of the work of the Irish Haemochromatosis Association.

https://www.echolive.ie/corkviews/arid-41855949.html

https://www.echolive.ie/corknews/arid-41866044.html
(For Instagram followers, links are in bio/Linktree)

27/07/2026

Watch Alice Kelly's The From Scratch Bakery great interview on Ireland AM as part of World Haemochromatosis Awareness Week 2026. Thank you so much Alice for keeping awareness of haemochromatosis high on the agenda!

Huge shout out to Anna McCarthy, friend, member and ambassador for the Irish Haemochromatosis Association, who swam the ...
08/07/2026

Huge shout out to Anna McCarthy, friend, member and ambassador for the Irish Haemochromatosis Association, who swam the Strait of Gibraltar, Spain to Morocco - breaking another record!!

The Gibraltar crossing is unique, where swimmers are crossing one of the busiest shipping channels in the world with over 300 ships and tankers passing through in any given day. What an achievement to swim from Europe to Africa in one day (but with lots of preparation in between!). Interestingly, the swimmer has right of way so even an oil tanker has to adjust its course to avoid the swimmer.

Congratulations Anna on all your achievements. We are so proud of what you do to raise awareness of haemochromatosis and also for being such a great athlete and swimmer! You also found the time to help launch World Haemochromatosis Awareness Week. Congratulations also to your co-swimmers Brianna and Neil. Well done all round 🎉🎉

Have a look at the stats!

Distance: 15,795m (Direct line: 15.2km)
Duration: 4 hours 24 minutes
Water Temperature: 15.5 - 16.5°C

Thank you to everyone who attended our events in Trinity College, where we focused on patient-centered clinical updates,...
26/06/2026

Thank you to everyone who attended our events in Trinity College, where we focused on patient-centered clinical updates, followed by the European Federation of Associations of Patients with Haemochromatosis (EFAPH) AGM.

These events brought together member association representatives, patients, researchers, academics and medical experts, some of who were attending the overall European Iron Club Conference, hosted by Professor John and Ryan and Professor Suzanne Cloonan.

The first event was officially opened by Prof. Mayka Sanchez. Prof. Domenico Girelli delivered a comprehensive presentation regarding recent advances in iron dysregulation. He explored the biological importance of iron, its historical context, and the dual clinical risks associated with iron imbalance. He detailed the critical biological roles played by hepcidin and ferroportin, and introduced emerging pharmaceutical developments, including Rusfertide (a hepcidin mimetic currently in Phase 3) and Vamifeport (a ferroportin inhibitor currently in Phase 2).

Following this presentation, Sebastian Kaluscha, a Senior Clinical Scientist from CSL Behring, provided an operational update on the "Ferroclear" clinical trial. A small cohort of HH patients are completely intolerant to standard phlebotomy or fail to respond efficiently, highlighting an urgent necessity for new pharmacological treatments. The ongoing trial is presently in its Phase 2 "proof of concept" stage to rigorously evaluate the molecule's safety and efficacy.

The business of the EFAPH AGM coverd administrative updates, including website and newsfeed alignment by Howard Don (HI) and Julie McHenry (EFAPH). Prof. Sanchez delivered a summary of the European Iron Club (EIC) conference, and Dr. Barbara Butzeck presented the EFAPH activity report. Individual country updates were shared by Germany, Ireland, Portugal, Spain, Italy, the Netherlands, France, and Hungary.

If you would like any further information on these events or a copy of the abstracts from the EIC Conference, please email Miriam, [email protected]

A new diet research project for haemochromatosis patients at the University of Galway needs our help! Can you complete a...
25/06/2026

A new diet research project for haemochromatosis patients at the University of Galway needs our help!

Can you complete a diet survey, which will take under 10 minutes, as part of the Galway University Virtuome Community Impact Research Programme. The study group is also made up of students from UCD and DCU and they are looking for people in Ireland with genetic haemochromatosis to participate in a new and anonymous research study.

Your participation will help produce and deliver a dietary resource with solid practical advice for patients and their families. All personal data is anonymised and will be deleted after the study is complete.

Your help will make a huge difference!

Please complete the survey here and like and share so that others in our haemochromatosis community can do the same: https://forms.office.com/Pages/ResponsePage.aspx?id=DQSIkWdsW0yxEjajBLZtrQAAAAAAAAAAAANAApWcuopUNFJMVEs1SDBaUVc4WVBURFc3N1BMTEJWTC4u

Deadline - 1st July. Thank you!

Voting closes at 5pm today! Please NOMINATE US to win a €20,000 donation in AIB's annual Community Fund to support our v...
19/06/2026

Voting closes at 5pm today! Please NOMINATE US to win a €20,000 donation in AIB's annual Community Fund to support our vital work with patients and their families.

Today is our last chance to get as many votes in as possible. It takes just one minute to make your vote count - using the information below.
Thank you!

TO NOMINATE US TODAY, VISIT: https://aib.ie/personal-forms/community-fund
✅ Enter your name & email
✅ Charity Name: Irish Haemochromatosis Association
✅ Charity Registration No.: 20049737
✅ Charity Location: Greater Dublin
✅ Social Theme: Other
✅ Why should we be funded: To ensure that no one in Ireland goes untreated or undiagnosed with haemochromatosis or 'iron overload' and to continue our vital work in supporting patients and their families

Nominate us today! To all our Haemochromatosis Community, we need YOUR help! Please NOMINATE US to win a €20,000 donatio...
17/06/2026

Nominate us today! To all our Haemochromatosis Community, we need YOUR help! Please NOMINATE US to win a €20,000 donation in AIB's annual Community Fund to support our vital work with patients and their families. It takes just one minute to make your vote count - using the information below.

Thank you!

TO NOMINATE US TODAY, VISIT: https://aib.ie/personal-forms/community-fund
✅ Enter your name & email
✅ Charity Name: Irish Haemochromatosis Association
✅ Charity Registration No.: 20049737
✅ Charity Location: Greater Dublin
✅ Social Theme: Other
✅ Why should we be funded: To ensure that no one in Ireland goes untreated or undiagnosed with haemochromatosis or 'iron overload' and to continue our vital work in supporting patients and their families
Closing date for receipt of nominations is 19 June 2026 at 5pm
For more information: https://aib.ie/community-fund

Deadline - this Friday, 19th June 2026.

Address

The Carmichael Centre, North Brunswick Street
Dublin
7

Telephone

+35318735911

Website

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