In 2011, the Italian HHT Patient Organization (HHT Onlus) proposed and promoted the creation of a European Network to strengthen the visibility and representative strength of HHT patients at the institutions and bodies of the European Union. The Network was institutionalized in the spring of 2014 together with associations from Ireland, Spain, France, Northern Italy, Norway and Germany.

In 2016 the network was further developed with the inclusion of The Netherlands, Switzerland and additional Nordic countries – Denmark, Sweden & Finland.


HHT Europe is a group of experts whose goal is to move faster, forward, together on all HHT related issues in the interest of patients, caregivers, physicians and researchers.

More specifically, our mission points are as follows:

  • To represent, protect and enforce the rights and interests of people with HHT at the European level.
  • To build a strong pan-European community of people living with HHT.
  • To spread awareness of HHT.
  • Improve access to information, services, diagnosis, treatment and care.
  • Promote the exchange of good practices.
  • To improve treatment and knowledge of the disease in the medical community.
  • To promote research in HHT.
  • Find a cure.

HHT Europe Statutes