Irish Haemochromatosis Association CLG

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

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.

16/06/2026

We still have a few places remaining for our upcoming in-person Lunch Talk with haemochromatosis experts on Saturday, 20th June at 1.15pm in Trinity College, Dublin.

This free event will be a great opportunity to meet people over lunch and network with your haemochromatosis community. We also invite you to join us on the same day at 4pm for the EFAPH (European Federation of Haemochromatosis Associations) AGM. Venue: Business School, Trinity College Dublin. To register for both events, email us at [email protected] with your details to confirm your attendance.

These two events will be attended by patients, patient representatives and experts from Ireland and across Europe and are hosted as part of the overall European Iron Club Conference (EIC).

For details on the full scientific programme 18-20th June, which is being organised by Professor John Ryan, Beaumont Hospital, please visit: https://www.eic-2026.com/programme

Please note, the organisers are also offering a discounted admission to the overall EIC conference on Sat 20th June for €50. Link to registration page here - https://abbey.eventsair.com/eic-2026/saturday-registration/Site/Register

[Note: For instagram users - use the above links in Linktree]

15/06/2026

We cannot thank you all enough for helping to make World Haemochromatosis Awareness Week earlier this month one of the best!

We reached so many people across all media, through online news, medical journals, national and regional print news and features, local and regional radio stations and through our social media channels.

But our work doesn't end here. We are asking everyone to continue to spread the word about haemochromatosis, Ireland's most common genetic disorder - what it is and how to get tested, diagnosed and treated. Start the conversation among family members, friends and colleagues today.

Our volunteers and interviewees are so many to mention, but you know who you are are! And we are truly grateful to you all.

11/06/2026

Meath native, Sharon O'Farrell urges early testing after her haemochromatosis diagnosis.

Sharon, a counsellor, psychotherapist and part-time lecturer, was diagnosed with the condition in 2016 after experiencing persistent tiredness, aching joints and a general feeling of unwellness. Like many people, she initially assumed she was suffering from low iron levels.

Sharon believes greater public awareness is needed, particularly because the symptoms of iron overload can mirror those of iron deficiency.

https://www.meathchronicle.ie/2026/06/09/beauparc-woman-urges-early-testing-after-haemochromatosis-diagnosis/

A BEAUPARC woman who spent months battling fatigue and joint pain before discovering she had haemochromatosis is encouraging others to seek testing early as World Haemochromatosis Awareness Week gets underway.

10/06/2026

World Haemochromatosis Awareness Week 2026 may officially be over, but our awareness work continues! Huge thanks to Alice Kelly for her interview with Chloe Barrett, journalist with RSVP Magazine during awareness week.

Alice opens up about her experience with Ireland's most common genetic condition, saying she first felt the symptoms of it when she was just 16 years old.

Alice Kelly, now 22, is a baker and entrepreneur who has millions of followers across various social media platforms under the name From The Scratch Bakery. Last year, she was diagnosed with haemochromatosis and is urging people to get tested for the genetic disorder.

https://www.rsvplive.ie/life/young-kildare-woman-urging-people-37261266
[LINK IN BIO - for Instagram followers]

09/06/2026

After a free medical check-up at 40, Tony McDevitt uncovered a hidden health truth - he had haemochromatosis. Tony shared his story with The Irish Sun over the weekend, to mark World Haemochromatosis Awareness Week 2026.

Tony from Kingswood in County Dublin has refused to let haemochromatosis hold him back. Since his diagnosis, he has donated over 50 times, volunteers at St. James's Hospital and has completed more than 260 parkruns in Ireland and around the world.

06/06/2026

The hidden risk of haemochromatosis - 10 key signs of Ireland's 'hidden condition' with 1 in 5 people carrying the 'Celtic gene'.

As part of our continuing campaign throughout World Haemochromatosis Awareness Week, we are urging peole to get tested for haemochromatosis, especially if you are concerned about symptoms.

Make that appointment with your GP for an initial iron panel blood test. If either your ferritin and/or Transferrin Saturation levels are raised, the next step will be a genetic blood test, which will rule in or rule out haemochromatosis.

You can read the full article here The Irish Sun

https://www.thesun.ie/health/17012243/irish-key-symptoms-hidden-condition-haemochromatosis-health/?got=true

05/06/2026

Great article in the Irish Daily Mail this weekwith Dr Maire Finn - 'You Could Have Haemochromatosis Without Realising It'.

Dr. Finn was diagnosed with haemochromatosis in her 40s and as a busy mother and GP, initally ignored the symptoms - but because there was a family history of the condition, Maire got the genetic test and once diagnosed, found the treatment very manageable.

Maire is a practicing GP in Ennis, Co. Clare. Dr. Finn also speaks regularly on radio about health matters. Thank you Maire for being such a great spokeperson for haemochromatosis during awareness week. You can also read the article on pressreader here: https://www.pressreader.com/ireland/irish-daily-mail/20260604/282016154001653

04/06/2026

Damian Boylan, who is a very active Local Councillor on Cork City Council, has made it his mission to raise awareness of haemochromatosis, having been diagnosed himself 23 years ago. It's rumoured that Cllr Boylan will be Cork's next Lord Mayor!!

Damian's father Tony also has haemochromatosis and we are delighted that the Echo .ie has highlighted awareness this week, as part of World Haemochromatosis Awareness Week 2026.

Damian says, 'When I was diagnosed it was no surprise. My mother had investigated haemochromatosis and I understood what the treatment was. Over the years I have become someone who hated needles to someone who isn’t bothered in the least.

I’ve often said that if you were to choose a condition from a list, you would choose Haemochromatosis. It's easily treatable once diagnosed. My message to everyone is during this awareness week, is know what the symptoms are and if you are worried or concerned, just go to your GP and get tested.'

Sincere thanks to John Dolan, Editor, Echo for helping to elevate awareness! Thank you to Damian for sharing your story and being a great public representative - and best of luck in your new role!