BENEFITS OF BEING A MEMBER OF HHT IRELAND …... Click Here

HHT-Ireland

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 HHT

Little Red helps us turn that challenge into something positive—awareness, education, connection, and hope.

After 65 Years of Mystery Nosebleeds

John McArt

John McArt’s Remarkable Journey to Answers and Awareness

Help us save lives by raising awareness

HHT-Awareness-saves-lives

How can we help

To our HHT Ireland community,

Help Dr. Sol’s HHT Clinic Become a Recognised Reference Centre — We Need Your Voice!

Dr-Sol

Have You Received Treatment from Dr. Sol Marcos in Madrid?

Dr. Sol Marcos has been performing sclerotherapy at the ENT Service of Alcorcón Foundation University Hospital, with remarkable results. Her innovative approach has significantly improved patients’ quality of life—many have seen chronic bleeding stop entirely and anaemia resolve, allowing a return to normal life.

If you’ve travelled to Dr. Sol’s clinic for treatment, please take a few moments to complete a short survey. Your feedback will help highlight the impact of her work and its value, particularly for Irish patients who face limited treatment options at home.

This is a small but meaningful way to support Dr. Sol and contribute to advancing HHT care—for today’s patients and future generations, in both Spain and Ireland.

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

1. LittleRed-BackToSchool

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.

HHT Ireland-Beyond what you see

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

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