Back with our friends from HHT Europe

The annual meeting of HHT Europe is an opportunity for delegates from HHT Ireland to collaborate and network with delegates from HHT patient organisations across Europe.

Dara Woods, Chair of HHT Ireland attended as the main delegate and ePAG to VASCERN. Dara was joined by our two scientific representatives – Marie Ralphs & Petronella McLoughlin as the HHT CAB delegate and the scientific representative . The two-day event includes skill development workshops, plenary update sessions on national, international and federated activities, sharing of best practices and planning for future steps in our collaborative efforts. The event is also open to patients from unrepresented countries who wish to create patient organizations in their countries

HHT Europe’s 2023 meeting, 4+5 Nov 2023 in Leiden has just finished.

What an intense 2-day event we had! Filled with inspiring presentations, brainstorming in small groups and a visit to the Leiden University Medical Centre where we met researchers who are wholeheartedly dedicated to finding better treatments for HHT.

HHT Europe’s meeting had three clear goals:


  • to strengthen our capacity,


  • to expand our network, and


  • to establish long-term goals for our federation (program planning).


Here are some of the Topics discussed

  1. The role of patient organizations in disease breakthroughs
  2. Involving patients in clinical trials
  3. Feedback from the 2nd International HHT Scientific Conference on Anemia
  4. HHT genome
  5. Reviving the Brain Screening Debate
  6. Pediatric care
  7. Family planning and contraception – a VASCERN study.
  8. Leiden University Hospital (LUMC)
  9. Best practices shared by several countries
  10. Horizon scanning in HHT – Drugs, Studies & Devices.

Reflections at the end of our 2-day event

Capacity building: We have learned a lot about how we can strengthen our ability to manage and drive our work forward. By exchanging ideas and experiences, we have increased our competence and ability to influence change.

Networking: We’ve been given a great opportunity to make new contacts and deepen our existing relationships. By collaborating and sharing our visions, we can reach further and make a bigger difference together.

Long-term goals: We have laid the foundation for our future work by establishing clear and ambitious goals. These goals will guide us in our work to improve the lives of people affected by HHT.

Together we are strong and on the right track towards making a real difference to the HHT community! 💪🇪🇺 #HHTEurope  #Leiden2023

Enjoy our photos below

HHT EU -beyond
HHT-Marie Ralphs
HH-Ria Blom
HHT-Luisa Botella
Oral iron 248
Pillars of good gov