ROW / HHT Belgium

23/07/2026

Poster NL and FR.... Spread the world 🌏 or Belgium 🇧🇪😉

23/07/2026

23/07/2026

23/06/2026

Happy World HHT /ROW day.

17/06/2026

Today Little Red 🇧🇪, had his first adventure.

16/06/2026

16/06/2026

🩸🔴 JUNE IS HHT AWARENESS MONTH 🔴🩸

"It's just nosebleeds."

How many times have people with HHT heard those words?

For many families, frequent nosebleeds are dismissed as "normal" or "something that runs in the family." But HHT is so much more than nosebleeds.
Behind the diagnosis can be,

🩸 Anaemia
💉 Iron infusions
🩸 Blood transfusions
🫀 AVMs in vital organs
🏥 Hospital admissions
📋 Scans and procedures
😴 Exhaustion and reduced quality of life

Receiving an HHT diagnosis can feel frightening. Suddenly there are new words, new tests, new appointments and a future filled with uncertainty.

But here's the important part...
❤️ A diagnosis can be lifesaving.
Knowing you have HHT means you can be screened for hidden AVMs before they cause catastrophic complications. It means doctors can investigate unexplained symptoms. It means families can access information, support and monitoring. Most importantly, it means people no longer have to suffer in silence wondering why they are constantly bleeding, exhausted or unwell.

If you or someone in your family experiences frequent nosebleeds, unexplained anaemia, iron deficiency, visible telangiectasia, or there is a family history of HHT, don't ignore the signs.

📢 Ask questions.
📢 Know your family history.
📢 Push for referrals.
📢 Seek specialist advice.
📢 Advocate for yourself and your loved ones.

Awareness saves lives.

This June, help us shine a light on HHT. Share this post, start conversations, and help us ensure that fewer people hear "it's just nosebleeds" and more people get the answers they deserve.

Together we can make HHT visible. ❤️
🌐 Visit our website to learn more about HHT, our services, support groups, patient forums and awareness campaigns.www.hhtireland.org

🙏 Please LIKE, SHARE and COMMENT to help us reach more families who may be living with HHT without even knowing it.

13/06/2026

💙❤️ June is HHT Awareness Month ❤️💙
and this month means everything to our HHT Ireland community.

On June 20th, we hold our Moveathon,our only fundraiser of the year, bringing together patients, families, friends, and supporters to move for a cause that reaches far beyond our shores. And on June 23rd, we stand together for World HHT Day, raising awareness of a condition that is often unseen, misunderstood, and under-recognised.

At HHT Ireland, everything we do is patient-focused. Every decision, every project, every conversation begins with one goal: to support people living with HHT better, stronger, and together.

Over the past year, our work has grown in ways we could never have imagined,

💻 We host monthly patient Zoom support meetings, and additional support whenever it’s needed
🧑‍⚕️ We actively engage with medics, meeting, contacting, and educating to improve understanding of HHT
📚 We run an annual Patient Forum, with this year focusing on nosebleed management
🌍 We send our scientific representatives to international HHT conferences, bringing the latest research home to our community
🏛️ We have a representative on the board of HHT Europe, ensuring our patients’ voices are heard at the highest level
📄 We provide leaflets, booklets, posters, and wristbands, all sent out free of charge
🌐 Our website is updated constantly as new HHT knowledge emerges www.hhtireland.org

And then there is me,Little Red ❤️ ,who started as a symbol, and has now become something much more. A friend, a voice, a comfort, and a reminder that no one living with HHT is ever alone. Little Red has helped our message travel further than we ever expected… and today, our community is truly global.

Our Zoom rooms are filled with faces from all over the world.
Our resources are now being posted internationally.
Our message is no longer just local ,it is worldwide.

And our HHT family? It keeps growing. 💙

If HHT Ireland has supported you in any way ,through advice, connection, resources, or simply being there when you needed it ,this is your moment to stand with us.

Help us continue to,
✨ support patients
✨ educate professionals
✨ grow awareness
✨ fund vital resources
✨ and keep this global community connected

Even the smallest support makes a difference. Every share, every donation, every conversation matters more than you know.

💙 Let’s make June count
❤️ Let’s make voices heard
🌍 Let’s stand together for HHT everywhere

📍 Moveathon – June 20th
🌍 World HHT Day – June 23rd

Thank you for being part of this journey.If you’d like to donate , please click on the link below 👇

JustGiving.com/campaign/moveathon2026