EHC delegation visits Slovenia to strengthen bleeding disorders care

The EHC Delegation visited Slovenia on 3–4 November 2025 to learn more about national approaches to bleeding disorders care and to support joint efforts to enhance treatment, access, and patient engagement across the country.

Organised in close collaboration with Društvo hemofilikov in drugih z motnjo strjevanka krvi Slovenije (DHS), the EHC National Member Organisation, the two-day visit combined clinical site visits, internal discussions, and a high-level meeting with Slovenian health authorities.

Learning from clinical expertise

The first day focused on clinical care and began at the Paediatric Clinic of Ljubljana’s Haematology Department, where Dr Barbara Faganel Kotnik presented current approaches for children with haemophilia and rare bleeding disorders. She also highlighted the role of the National Registry, which is managed by healthcare professionals within the paediatric department and serves as an essential tool for data collection, monitoring, and improving patient outcomes across Slovenia.

Later that morning, the delegation visited the Adult Haematology Department at Ljubljana University Clinical Centre, hosted by Prof Irena Preložnik Zupan. She outlined current practices in adult patient care, highlighted achievements in clinical management, and shared perspectives on future needs for improving treatment pathways and comprehensive support.

The delegation also toured the Central Laboratory of the University Clinical Centre, always guided by Prof Preložnik Zupan. The team was introduced to the state-of-the-art diagnostic facilities available in Slovenia, which ensure that all patients can benefit from advanced testing and precise diagnosis — a cornerstone for effective and personalised treatment.

In the afternoon, an internal coordination meeting took place between the EHC Delegation and representatives of Društvo hemofilikov Slovenije, led by Janez Dolinšek, DHS President.

Engaging with health authorities and decision-makers

On 4 November, the EHC Delegation and DHS held a meeting at the City Hotel Ljubljana with representatives from the Slovenian Ministry of Health, including Blaž Andoljšek, as well as officials from the Health Insurance Institute (ZZZS) and leading national haematologists.

The session opened with welcoming remarks from DHS and the EHC, followed by an address by Janez Dolinšek and an introductory statement from the Ministry of Health representative. EHC President Miguel Crato and EHC CEO Olivia Romero Lux then presented the EHC’s work and European perspectives on access and care for people with bleeding disorders.

The haematology expert session featured Dr Faganel Kotnik and Prof Preložnik Zupan, who delivered an overview of Slovenia’s current medical practices and achievements in both paediatric and adult patient care, with a focus on comprehensive, multidisciplinary management.

During the roundtable discussion, participants focused on shared priorities and opportunities for progress. Central to the dialogue was the potential establishment of a multistakeholder National Committee to guide bleeding disorders policy and coordination. The importance of the National Registry and the ongoing improvement of data collection and management were also emphasised as key to ensuring evidence-based care and policy planning. Furthermore, the discussion addressed the rehabilitation needs of the bleeding disorders community, underlining the importance of holistic, long-term support for patients.

The meeting concluded with reflections and next steps presented jointly by the EHC and DHS, reaffirming a shared commitment to improving care and ensuring equitable access for all patients.

A shared commitment to progress

The EHC extends its sincere gratitude to DHS for organising the visit, as well as to all Slovenian healthcare professionals and decision-makers who contributed to these constructive discussions.

This country visit reflects the EHC’s core mission: to stand alongside its National Member Organisations in advocating for people with haemophilia and all rare bleeding disorders across Europe — ensuring that every patient, in every country, receives the care and recognition they deserve.