The Final Conference, together with the Management Committee meeting and working group meetings for the COST Action CA16234: European Cleft and Craniofacial Initiative for Equality in Care (ECCE), have been held at the Faculty of Medicine within the “Carol Davila” University of Medicine and Pharmacy, Bucharest, Romania. This was preceded by a training school where more than 40 participants attended from over 30 partner countries. The consortium, which is led by Prof Martin Jens Persson from the University of Kristianstad in Sweden,  includes a combination of “players” in research, health care delivery and training expertise together with the international NGO, the European Cleft Palate Organisation (ECO).

Prof Jean Calleja-Agius highlighted the challenges of conducting research and looking after patients affected by rare conditions, during her lecture entitled ‘The Importance of Being Rare’. In this oral presentation,  parallels were drawn between this particular COST Action focusing on patients with cleft lips and craniofacial anomalies and the COST Action CA18117 Gynocare, which Prof Calleja-Agius herself is currently chairing and which specifically deals with patients with rare gynaecological cancers. This was followed by another presentation by Prof Jean Calleja-Agius on: “Access to cleft and craniofacial care in Europe: A challenge”, based on the outcomes of the working groups of the ECCE COST Action.

This inter-COST collaboration is an ideal way of enhancng research particularly in under-researched areas such as rare gynaecological cancers and craniofacial anomalies.