Report on the National Representatives Meeting at UEGW, 4 October, 2025

On October 4, 2025, during the UEGW in Berlin, the Governing Board of ECCO met with representatives of the International Federation of Crohn's & Colitis Associations (IFCCA) and patient associations as well as with ECCO National Representatives from many countries across Europe. During this very stimulating and informative meeting, exchanges and brainstorming sessions were held on the main ECCO Projects and the expectations of National Representatives and patient representatives in these fields. The meeting, which extended over the entire day and attracted around 60 participants, was split between plenary presentations and break-out thematic sessions.

Topics tackled during the plenary presentations and break-out sessions included an update on IFCCA initiatives, actions of ECCO to foster the development of multidisciplinary teams, the E-QUALITY project, the UR-CARE platform, ECCO Guidelines, the e-CCO Learning Platform and ECCO e-Guide, the ECCO Educational Programme and IBD Nurse education.

IFCCA highlighted its constant growth and the change in its name (from European Federation of Crohn's & Colitis Associations – EFCCA), which reflects its status as a global organisation. Among its priorities are patient education and empowerment, but also research and information and advocacy. The key achievements of recent years are a growing community and the creation of a global federation, greater patient empowerment through the Academy, the DIVA (Data Insights for added therapeutic VAlue) initiative, a youth group, a stronger role in EU and research projects and a louder and respected voice in policy and scientific debates.

ECCO continues to work on fostering multidisciplinary teams across Europe and globally. Nurses are playing a central role in these multidisciplinary teams and ECCO will continue to invest a lot in their training. A new format will allow referent nurses to import a training programme (Train the Trainers) to their country, which will enable a broader community of nurses to participate in their own language and thus increase interest and interaction. Greater emphasis is also being placed on the role of dietitians: recent developments in the epidemiology and treatment of IBD have emphasised the key role of food and nutrition, and the involvement of dietitians in the multidisciplinary team and enhanced interaction with IBD Nurses have accordingly become priorities. Beyond this, there are a number of recent or ongoing initiatives and manuscripts that involve various ECCO Committees. These include several Topical Reviews, the Consensus on Management of Inflammatory Bowel Disease in Low- and Middle-Income Countries, the Consensus on Dietary Management of Inflammatory Bowel Disease, the Guideline on Diagnostics and Monitoring of Patients with Inflammatory Bowel Disease and the 9th Scientific Workshop on Artificial Intelligence in Inflammatory Bowel Disease.

The ECCO Quality of Care (E-QUALITY) project has revealed gaps between ECCO Recommendations and what can currently be achieved across Europe and globally owing to various constraints and limited resources. Identification of the latter is key to the development of an appropriate roadmap that will assist in improving the quality of care for IBD patients in different regions. The E-QUALITY initiative includes several surveys and a repository on the ECCO Website that indicates (for those centres which have responded) the resources and facilities available in different areas of the world. Besides providing a picture of the situation regarding resources for IBD care, the repository represents a potentially useful tool for further training and development through exchanges and fellowships. Several initiatives are ongoing in this field, with the involvement of patients and National Representatives, educational programmes and webinars.

The e-Guide has been updated, focusing on improvements in IBD care based on optimal use of the ECCO Guidelines. Likewise, ECCO Educational Workshops aim to adapt the use of ECCO Guidelines to country-specific realities. These workshops may use the e-Guide and foster multidisciplinary collaborations for high quality of care adapted to each country. Several such workshops have been organised in 2025, in Poland, Estonia, Hungary, Peru and Egypt. In 2026, further workshops will be held in Armenia, Croatia, Lithuania and United Arab Emirates. A new call will be published in Spring 2026 for National Representatives to apply for an ECCO Educational Workshop to be held in their country in the coming years.

The e-Learning Platform continues to evolve, with webinars, advanced training programmes in intestinal ultrasound and capsule endoscopy, e-Library updates and e-Guide updates. The e-Library is constantly being updated, with old material removed and new material added, thereby covering the full IBD Curriculum for both doctors and nurses.

ECCO has made huge efforts to set up the UR-CARE platform. This platform provides a user-friendly, validated and carefully constructed IBD registry, with a legal framework, including GDPR, on a solid IT system. More than 44,000 patients have now been recorded, from 90 centres and 22 countries. UR-CARE is clearly growing and ECCO continues to encourage its use not only for routine care but also for the development of both prospective and retrospective research projects.
The ECCO Guidelines have always been a major achievement of ECCO and are considered important worldwide. National Representatives play an important role in the development of these guidelines through the voting process, which allows the voices of all countries to be heard and considered. The ECCO Community, with GuiCom and the Governing Board of ECCO, are currently working on the planning of the next generation of guidelines to ensure that they best respond to the needs of clinicians and multidisciplinary teams. The GRADE method allows such translation of guidelines focusing on relevant questions towards clinical practice.

Many fruitful exchanges are continuing to take place between the ECCO Governing Board, patient representatives and ECCO National Representatives around the various key ECCO Projects and the ECCO Mission, taking into account patient expectations and the specific demands and realities of different countries. These exchanges will allow further improvements in work by the ECCO Community and contribute to the delivery of high-quality IBD care in Europe and globally.