HHT at a glance
HHT stands for Hereditary Hemorrhagic Telangiectasia. It is a rare hereditary disorder that causes abnormal connections, called arteriovenous malformations (AVMs), to develop between arteries and veins. The most common locations affected are the nose, lungs, brain and liver. HHT affects 1 in 5000 people worldwide.
Our Mission
Our Mission - HHT Europe is a federation of patient organizations whose goal is to move faster, forward, together on all HHT related issues in the interest of patients, caregivers, physicians and researchers. In order to achieve this our volunteers engage in all European Rare Disease settings and represent Europe in International HHT related summits. Our main goals are:
Represent, protect and enforce the rights and interests of people with HHT at the European level.
Improve access to information, services, diagnosis, treatment and care.
Ensure the HHT patient perspective is heard, contributing to better outcomes in care and rights.
HHT Europe News
Claudia Crocione recipient of the 2020 Black Pearl Award
The Black Pearl Awards shine a light on the remarkable efforts to build a brighter future for everyone living with a rare disease. We are very proud that HHT Europe Managing Director, Claudia...
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I HAVE THE SAME RARE DISEASE THAT KILLED MY BROTHER
Katie Woods tells her story of living with HHT I was like all of the other kids at school, just that my doctor was in Cork and not in Dublin,
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