The European Reference Network for Craniofacial Anomalies (ERN CRANIO) was establsihed by the EU in 2017 to bring together expertise in all craniofacial  areas, including cleft lip and palate. As lead patient advocate and board member within the network, ECO Executive Director, Gareth Davies,  has been given a fairly free rein to develop clinician/patient initiatives, the most significant of which has been the establishment of a Clinician Patient Engagement Group which comprises clinical and patient representatives in equal numbers, drawn from a selection of the 35 centres of excellence in cleft and craniofacial care across Europe.  At the most recent meeting of the network in Gdansk in November 2024 he gave a keynote speech in the plenary session.    At the conference he  launched a survey asking clinicians to provide details of support groups they knew about and also asking whether they were interested in receiving information and toolkits on ‘how to’ set up a support group that, with the clinical team, would try to address unmet needs. The response has been very encouraging (40 responses so far from different individuals withing the 35-centre network).  Importantly for ECO, ERN CRANIO is coordinated from the Netherlands and in recent years we have developed close links with clinicians and patient representatives in the Netherlands which we can draw on going forwards, as a Dutch NGO.