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.
Whether coordinating international working groups, piloting new educational tools, or facilitating grassroots engagement, our projects are built on shared values of equity, expertise, and patient-centered care.
Explore our current projects to see how we’re making an impact—together with our partners and the cleft community.
The Face Equality Training
The EU funded Face Equality Training (FET) project is drawing to a conclusion with a final meeting of the 8 partner countries in Iasi, Romania in June. The project has developed comprehensive training resources for health professionals and NGOs which highlight the challenges faces by people with a visible difference, such a s a cleft, and provide advice on how these challenges can be addressed. Of specific note are modules on patient centred care, overcoming common challenges, boosting wellbeing, getting the most of health care and accessing and making the most of local and online support. There are also modules that highlight campaigns to promote face equality and tips on how to develop social activism strategies for lobbying for better resources that will facilitate better social acceptance. The project partners are currently piloting the training materials and feedback from this will allow us to fine tune both the training curricula and means of delivery. The course can be delivered in a day but there is sufficient material on the project website to develop the course into a 27-hour micro credential with home learning and self-assessment.
ECO's role in the Global Cleft Taskforce
ECO has been asked to help coordinate and develop a set of recommendations on a 'Access and Referrals' to cleft care, with particular emphasis on low to middle income country settings. This is part of a wider theme setting standards for Neonatal Cleft Care. This topic was well researched in Europe while we were putting together our Early Care Guidelines (LINK) in 2016 but will now need updating in light of new practices and contemporary studies. Reports have shown that the most distress faced by parents and families is during the period between diagnosis (before or after birth) and the eventual meeting with the cleft team. Once they have met the specialists, the adjustment to having a baby with a cleft becomes easier with the knowledge that a treatment plan is in place. Cleft care may be available, with varying degrees of multidisciplinary involvement, but planning effective referral systems must be a priority so families have access to care in a timely manner. A working from several countries will present their findings and recommendations at the 15th International Conference on Cleft and Related Craniofacial Anomalies in Kyoto, Japan, in October 2025.
Patient Clinician Engagement Group
ECO recently initiated a Patient Clinician engagement group aimed at improving communication between patients and clinicians, encouraging them to work together on projects to improve overall outcomes in cleft and craniofacial care. Meetings are facilitated by the European Reference Network for Craniofacial Anomalies (ERN CRANIO) and focus areas have been the development of patient support groups, patient involvement in the creation of clinical guidelines and research, the development of patient friendly information and how clinicians can help facilitate and promote shared decision making. Meetings are every two months, online, and the group welcomes input from guest speakers. At the most recent meeting in April, Ines Hernandes from EURORDIS gave a presentation on the development of the Patient Partnership Framework, explaining its purpose, development, and importance for fostering meaningful collaboration between people living with rare diseases (PLWRD) and healthcare professionals.
