OUR ACTIONS

As a result of our Nosebleed workshop carried out in Nov 2019, HHT Ireland is delighted to produce an informative leaflet for our HHT patients & carers.

We remind ourselves that we are not doctors but by our own experience we often are the experts!

For more informations click  Coping with Nosebleeds

In collaboration with HHT Europe and our National HHT Centre in Cork, we published & distributed Understanding HHT Booklet and HHT-Flyer to family members, Doctors & Dentists nationwide.

As we are registered with the National Rare Diseases Office in Mater Hospital, Dublin,  we stock a supply of our HHT Booklets & Flyers in the Rare Disease Information Booth. These are free to everyone to take home.

We hope you enjoy this material and find it helpful in explaining the disorder to others.

Each year HHT Ireland hosts our Annual Patient & Family Forum. This is an opportunity for all families to come together and share information whilst offering support and empathy to their fellow patients.

Patients share their techniques to managing daily nosebleeds. They offer fresh ideas and suggestions on how to cope with the challenges of HHT.

Patients are often happy to recommend their own HHT specialist to others.

The support and friendship offered at these events are invaluable to many!

In 2019 we were delighted to have 4 HHT specialists attend our Annual Patient Forum as guest speakers. They were specialists in 4 areas – Nose, Lungs, Brain & Gastro-Intestinal.

We hope to invite many other HHT specialists in the future. It is so important that our healthcare professionals truly understand how HHT affects us each day.