BENEFITS OF BEING A MEMBER OF HHT IRELAND …... Click Here
Meet Little Red – Our HHT Advocate
Every awareness movement needs a voice. For HHT Ireland, that voice comes in the form of Little Red—our community mascot and advocate.
Little Red helps us turn that challenge into something positive—awareness, education, connection, and hope.
Moveathon 2026 – Get Moving for HHT Ireland!
Lace up, jump in, or dive in — join Moveathon 2026 on 20th June and help raise awareness of HHT ahead of World HHT Day.
Help us save lives by raising awareness
How can we help
Five Generations. One Condition. One Family's Fight to End the Silence.
For over a century, Michael MacGinty’s family has lived with unexplained bleeds — long before anyone had a name for it. This June, to mark HHT Awareness Month, Michael shares a story that spans five generations and carries a message that could save lives right here in Ireland. It’s a story of loss, resilience, and hard-won hope.
To our HHT Ireland community,
New international consensus: Sclerotherapy for HHT patients!
A Delphi consensus published in August 2025 brings welcome clarity to the treatment of HHT-related nosebleeds. Six leading international HHT experts have now reached agreement on clear, evidence-based guidelines for the safe and effective use of sclerotherapy.
So what does this consensus conclude?
And what does the research tell us?
The evidence is now compelling. Sclerotherapy is scientifically validated, clinically well-established, and patient-centred. The time is right for Ireland to take a confident step forward in adopting this treatment as part of standard HHT care.
Read more about the Delphi consensus published in Hemostasis Today (August 2025):
“A Safe Guide to the Use of Sclerotherapy for Hereditary Haemorrhagic Telangiectasia-related Epistaxis.”
https://hhtireland.org/sclerotherapy/
HHT IRELAND | EMPOWERING LIVES
HHT Ireland’s Commitment to Awareness, Support, and Research
What is HHT?
Hereditary Hemorrhagic Telangiectasia (HHT) is a rare genetic disorder characterised by abnormal blood vessel formation, leading to frequent nosebleeds, skin telangiectasias, and arteriovenous malformations in various organs (AVMs).
Dedicated to improving lives
HHT Ireland is dedicated to improving the lives of individuals and families affected by this condition through a comprehensive approach that encompasses awareness, education, support, and research. Its vision is to create a world where those living with HHT have access to early diagnosis, effective treatment, and a supportive community.
Raising Awareness
Our aim is to raise awareness among the public and healthcare professionals, to ensure that individuals with HHT receive accurate information and high-quality care, and drive research efforts towards better treatments. HHT Ireland’s actions include organising educational events and support groups, advocating for improved healthcare policies and collaborating with international HHT organisations.
Fostering a network of support
By fostering a network of support and resources, HHT Ireland aims to alleviate the challenges faced by those with HHT and to make significant strides in combating this often-overlooked condition.
Essential Tips for Parents Preparing for School
Living with HHT
Clare Brown shares her emotional story with Sharon from HHT Ireland about the challenges her son met when he presented with severe pains and diagnosed with a Ruptured Pulmonary AVM.
We would like to give a heartfelt thank you to Bernie Breach HHT S.Africa for this beautiful poem.
By working together we can find effective solutions to improve HHT patients in their daily lives.
Your life story is valuable in making a difference, the more we talk about it, the more we can change things.
TOGETHER WE HAVE THE POWER TO CHANGE THINGS
You can send us your story to info@hhtireland.org or fill in the form below
