HHT Europe Conference, Rome 2026

March 13th & 14th.

Representation by Dara Woods & Petronella McLoughlin

Dara Woods and Petronella McLoughlin recently represented HHT Ireland at the HHT Europe face-to-face conference in Rome. The event brought together patient organisations, clinicians, researchers, and industry partners to share knowledge, discuss current challenges, and plan future collaboration.

Below is a detailed overview of the sessions attended and the key topics discussed.

What the Conference Covered

Pre-Meeting Workshop – Supporting New & Growing Organisations

Friday morning began with a pre-meeting workshop focused on supporting new and developing patient organisations.

Topics included:

How to create and fund a patient organisation
Steps involved in establishing a new HHT Centre
Understanding the structure of HHT Europe, including governance, workgroups, and collaboration opportunities

Session 1: Setting the Scene and Horizon Scanning

This session opened with a historical overview of HHT Europe, presented by Bienve Muñoz (President) and Anne Goustille (Vice-President), tracing its development since 2012.

Petronella McLoughlin (HHT Ireland and member of the HHT Europe CAB) then delivered a detailed and insightful presentation on drug development, explaining the complex processes involved and highlighting the important role patient organisations play at this level.

An in-depth presentation on horizon scanning of clinical trials in HHT was then given by Dr Luisa Botella (HHT España), offering valuable insight into upcoming research and treatment developments.

Before the coffee break, Pierre Saint-Mezard, PhD (Chief Scientific Officer & Co-founder, Vaderis Therapeutics) and Azmi Nabulsi (President & CEO, Vaderis Therapeutics) presented results from a proof-of-concept study and introduced an upcoming Phase 3 clinical trial.

Following the break, Bienve Muñoz and Solveig Ezrahi (HHT Norway) presented on the mapping of HHT Centres across Europe. Attendees then participated in breakout discussions to share the situation in their own countries. The valuable feedback gathered has led to plans for a new collaborative project on this topic.

Session 2: Hot Topics in HHT

This session was introduced by Claudia Crocione (HHT Italia and Managing Director, HHT Europe) and focused on key clinical developments.

Presentations included:

Dr Luigi Di Martino (HHT Centre, Rome) – Iron management in HHT patients
Prof Eleonora Gaetani (HHT Centre, Rome) – Anti-platelet therapy in HHT, including evidence from the multi-centric PRIN study
Dr Paolo Farneti (HHT Centre, Bologna) – A new consensus paper on sclerotherapy, an important development for discussions with ENT specialists
Cassi Friday (Director of Research Programs & Grants, CureHHT) – A new consensus for assessing the severity of epistaxis

The session concluded with an engaging Q&A discussion.

Session 3: Sharing Best Practices

This session was introduced by Dara Woods (President, HHT Ireland) and highlighted successful initiatives from across Europe.

Contributors included:

Lourdes Cano Alcina (HHT España) – Development of the Spanish HHT App
Didier Erasme (President, HHT AMRO France) – The French HHT App
Lutz Gruenewald (HHT Germany) – Learning Through Encounter initiatives
Giuseppe Regalia (Fondazione Onilde Carini) – A booklet for young patients, translated from the original French version written by HHT AMRO France, into Italian
Giulia de Santis (HHT Italia) – The benefits of active participation in research

Finally, Dara Woods presented HHT Ireland’s “Little Red” initiative, showcasing it as a successful and impactful support tool for patients.d

Session 4: Evidence-Based Advocacy Workshop

This session was led by Claudia Crocione (Managing Director, HHT Europe), who delivered an insightful presentation on the importance and impact of evidence-based advocacy.

She introduced key resources, including the Rare Barometer survey tool, which provides high-quality data to support advocacy efforts across Europe.

Bas Van Leeuwen (HHT Netherlands) followed with a presentation emphasising the importance of the patient voice in shaping policy and improving services.

Participants then took part in breakout group discussions to simulate how evidence can be collected within HHT communities, with feedback shared among all attendees.

Session 5: Faster Forward Together

In the final session, Claudia Crocione presented future plans, including strategic projects and workgroups for the period 2026–2029.

She outlined upcoming initiatives and invited organisations to express interest in participating in new workgroups, with further engagement to follow.

The conference concluded with closing remarks from the President Bienve Muñoz, who thanked attendees for their active participation and strong sense of collaboration. He encouraged all organisations to stay involved and contribute to future projects, reinforcing the theme of moving “faster forward together.”

Conclusion

This conference provided a valuable opportunity for HHT Ireland to:

Engage with leading experts and organisations across Europe
Contribute to discussions on research, treatment, and advocacy
Share our own successful initiatives
Help shape future collaboration and strategic direction

The participation of Dara Woods and Petronella McLoughlin ensures that HHT Ireland continues to play an active and meaningful role at a European level, helping to improve outcomes for all those affected by HHT.