Executive Director Gareth Davies has been promoting the patient’s voice at two meetings of the new European Reference Networks in Uppsala in Sweden and in Brussels. The Networks were established in 2017 to bring together specialists in rare diseases across Europe https://www.youtube.com/watch?v=K1tzUfBJ3jA
ECO is a key player in the network covering craniofacial anomalies (ERN CRANIO) and was invited in November to present at a key meeting in Uppsala and take part in specialist parent perspective workshops at a meeting in Brussels. Speaking in Uppsala, Mr Davies emphasised that there are only two groups of people caring passionately for those born with clefts or other craniofacial anomalies – these are: the doctors treating them and the families themselves – they must therefore work together to achieve maximum opportunities and best outcomes relating to treatment, resources, societal perceptions and education.
The ERN CRANIO has a specific workstream for cleft lip and palate currently led by ECO board member Professor Peter Mossey. Priorities over the coming year are to further develop standards of care (drawing from ECOs own guidelines) and come up with an agreed set of outcome measures, featuring strong patient input. Centres in Eastern Europe are currently under-represented in the ERN and ECO is trying to address this by bringing in candidates from its own extensive network featured in the Gateway www.gateway.europeancleft.org