Today, on World HHT Day, we want to begin with one very important message — thank you.

Thank you to the researchers who dedicate their lives to understanding HHT and working tirelessly to find better treatments and one day, a cure. Behind every breakthrough is a team of people spending countless hours in laboratories, clinics and universities driven by hope for a better future for all families affected by HHT.

Thank you to the medics, consultants, nurses, specialists and healthcare teams who care for HHT patients every single day. Your expertise, compassion and commitment make an enormous difference to our community. For many living with HHT, having knowledgeable medical professionals by their side can be life-changing.

Thank you to our families, friends and loved ones who support us through the daily realities of living with HHT. Whether it is accompanying us to appointments, helping during difficult periods, or simply listening and understanding, your support carries us through the challenges that HHT can bring.

And finally, thank you to our patient organisation community — the volunteers, advocates and supporters of HHT Ireland who work tirelessly behind the scenes to provide information, support, awareness and hope to patients and families across the country. Your dedication ensures that no one living with HHT feels alone.

While today is a day of appreciation and awareness, it is also a reminder that there is still much work to do.

For too many patients, the journey to diagnosis remains far too long. This “Diagnostic Odyssey” means individuals can spend years searching for answers before finally receiving an HHT diagnosis. Earlier recognition and diagnosis can prevent serious complications and improve outcomes significantly.

This is why continued education and awareness among healthcare professionals is so important. We must ensure that doctors, nurses, emergency departments, dentists and allied healthcare teams have access to the right information and resources when they encounter possible HHT symptoms.

Key resources such as the 2nd International HHT Guidelines, along with the growing body of research and publications from leading HHT researchers around the world, are invaluable tools that can support earlier diagnosis, better treatment pathways and improved patient care. Raising awareness of these resources remains one of the most important missions for patient organisations like HHT Ireland.

As our organisation continues to grow, we also need more helping hands.

A charity cannot exist without a reliable and committed team of volunteers. Every awareness campaign, patient support initiative, fundraising effort and educational project depends on people who are willing to give their time, skills and energy to help others.

If you have ever considered getting involved, we would love to hear from you. Whether you can offer a few hours occasionally or would like to become more actively involved, your support can make a real difference to the HHT community in Ireland.

Please consider volunteering and contact us at dara@hhtireland.org.

Today, we wish everyone in the global HHT community a very happy World HHT Day. 🔴

Please take a moment to support your patient organisation by donating on our JustGiving page and helping us continue our work for HHT patients and families across Ireland.

Together, through awareness, research, support and community, we can continue to make progress and bring hope for the future.