Current Projects
At the European Cleft Organisation (ECO), our projects are designed to create lasting change in cleft care across Europe and beyond. We work with partners from the medical, academic, NGO, and patient communities to develop practical solutions that address real challenges faced by individuals born with cleft lip and/or palate.
Our initiatives span a wide range of focus areas—from developing inclusive training resources for health professionals and NGOs, to contributing to international policy frameworks that improve access to care. We’re also deeply engaged in strengthening patient-clinician collaboration, supporting early diagnosis and referral systems, and promoting face equality and social inclusion.
RarePrepare Question Prompt List
ECO is participating in a European collaboration to develop RarePrepare Question Prompt List. It is a tool designed to help people living with rare and complex conditions, as well as their parents and caregivers, prepare for specialist appointments, particularly during the first year after diagnosis. The project brings together patient representatives and clinicians to identify and refine the questions that matter most to patients and families. Following a in-person working meeting in Nijmegen , the group is refining the list to ensure that the questions are clear, practical and easy to use, supporting more informed conversations and stronger patient–clinician communication.
Solutions Group: Patient Coordination in Comprehensive Cleft Care
ECO will participate in Solutions Group 2: Patient Coordination in Comprehensive Cleft Care (CCC), as part of Circle of Cleft Professionals Solutions for Comprehensive Cleft Care Conference 2027: Behind the Scenes, Into the Spotlight, an initiative bringing greater visibility to essential but often under-recognised work in cleft care.
Navigating the long-term, multidisciplinary treatment journey can be challenging for patients and families, particularly in low- and middle-income countries (LMICs) and under-resourced settings. Dedicated patient coordination can help families navigate care, improve adherence to treatment plans, strengthen data collection and support the work of multidisciplinary cleft teams. Yet this vital role remains chronically underfunded and undervalued.
Together with 10–14 interdisciplinary cleft professionals from around the world, ECO will contribute to discussions on effective patient coordination models and recommendations for good practices to strengthen and expand this essential role.
Transition from paediatric to adult care
As part of its Patient–Clinician Engagement Group at ERN Cranio, the European Cleft Organisation (ECO) is part of the initiative to improve the transition from paediatric to adult care for young people with craniofacial conditions. This transition can bring challenges beyond changing healthcare services, including gaps in information transfer, uncertainty about future treatment and follow-up, and the gradual shift of responsibility from parents and healthcare professionals to the young person. At the same time, young people navigate important life changes that may affect their confidence, wellbeing and access to support. Together with other patient advocates and clinicians ECO is exploring these challenges from the patient perspective and promoting dialogue between patients and healthcare professionals to identify good practices and practical approaches towards more structured, continuous and patient-centred transition pathways across Europe.
