As part of our World Haemochromatosis Awareness Week 2024 campaign this year, which took place from 1st – 7th June, the Irish Haemochromatosis Association achieved a reach of over 7 million across online and social media and traditional media including print and broadcast. Our aim is to continue to increase awareness of the condition, urge people to ‘Get Checked for Haemochromatosis’ and educate people on the symptoms in order to save lives – symptoms can range from chronic tiredness and joint pain, to abdominal pain and irregular heartbeat.
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We officially launched World Haemochromatosis Awareness Week in Phoenix Park in Dublin. Thank you to our wonderful Ambassador and GAA All Star sportsman, David Beggy, Margaret Mullett, Honorary President IHA, Jessica Byrne, volunteer and student nurse, Ruby Harris-Pope aged 6 and Sam Crowley aged 12 for helping to raise more awareness of Ireland’s most common genetic disorder and shine a light on the condition. Sincere thanks to all the media, both print, online and broadcast who scheduled interviews with our volunteers and members and who continue to help us spread the word. Thank you to the GPs and Consultants who support us every year by promoting our #Getchecked #Gettested #behaemochromatosisaware and #Knowthesymptoms messages.
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This year, several City and County Councils throughout the country again supported the campaign and joined the wider, international initiative to ‘Light Up Red’, lighting up several iconic public buildings during World Haemochromatosis Awareness Week. Thank you to everyone who participated! Buildings illuminated in red included the Dublin Convention Centre, Fingal Town Hall, the Casino Model Railway Museum, Malahide, Swords Castle, Wexford County Hall, Cork City Hall, Limerick Council Offices, Sligo City Hall, Donegal Public Services Centre and Kerry County Council Buildings, Tralee, Princes Quay and Ashe Memorial Hall Building, Tralee, Killarney Town Hall and Kenmare Courthouse Building, Kenmare, Co. Kerry. We joined a global campaign where almost 500 buildings worldwide were lit up to mark awareness week. A special award this year should go to the Canadian Haemochromatosis Society for lighting up Niagara Falls red this year! Now that’s something!
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For more information and a copy of our launch press release, you can read the full release here – https://haemochromatosis.ie/wp-content/uploads/2024/05/Press-Release-World-Haemochromatosis-Awareness-Week-2024-2.pdf
If you would like to participate in raising more awareness of genetic haemochromatosis throughout the year, just send us an email to [email protected] If you would like to organise an information stand or a fundraising coffee morning in support of World Awareness Week for next year in 2025, please get in touch. If you would like to donate to support our work and provide information and resources for more patients and their families in Ireland, you can donate here – https://haemochromatosis.ie/donate-to-the-iha
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Information & Resources for Patients:
We provide information, support and resources for haemochromatosis patients in Ireland through our:
- Helpline – Telephone (01) 8735911 or Email [email protected]
- Information guides and resources – https://haemochromatosis.ie/patients-info
- Patient Stories – see in the “your stories” page – https://haemochromatosis.ie/your-stories
- Membership support – all members receive an introduction pack with printed guides and information materials. If you would like to sign up as a new member, you can join us here – https://haemochromatosis.ie/become-a-member
- Testing for haemochromatosis – You can request a biochemical or iron panel test from your GP. If either your ferritin and/or TSat is raised, it could indicate haemochromatosis. However a genetic test will determine if you have haemochromatosis. You can also order genetic test kits for hereditary haemochromatosis online here through empowerDX Ireland: (https://www.empowerdx.ie/empowerdx-ireland-shop-products/haemochromatosis), who are currently offering a 20% discount (10% on the top of that for those who sign up to receive their newsletter).