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,...
We are delighted to announce that the UK-based Cleft Collective has now registered on ECO’s European Cleft Gateway The Collective has a huge pool of data that can be accessed (on request) by researchers. The Cleft Collective cohort...
Our Early Cleft Care Training Programme (ECTP), funded by an Erasmus + EU grant, has now sucessfully concluded with all project results appearing on the project website www.cleftectp.com. The project was showcased at the Sophia Children’s Hospital in Rotterdam...
It is hard to believe nearly 3 years have passed since this project began and now we are organising an event in Amsterdam to promote the outcomes (see above). The project brought together partners from from 9 countries including...
Face Equality Week, championed by Face Equality International (FEI), is this year focusing on counteracting stigma with the #We Will Not Hide campaign. FEI, the organization which works to protect the human rights of people with disfigurements is an...
To date we have worked with partners in Bulgaria, Greece, Lithuania, Latvia, Romania, Spain, Serbia and Slovenia. We have been invited to carry out training in Macedonia and Ukraine and all these countries will be prioritized in our plans...
ECO has been working with a partner, the Bulgarian Association of Children with Clefts and their Parents (ALA), in Plovdiv, Bulgaria, since 2009. ALA is a registered charity which supports the work of the cleft team at St George’s...
In Romania ECO is pleased to report the continuing activities of RomaniaCleft, especially in developing dialogue with other countries on all aspects of cleft care. RomaniaCleft, set up in 2012 two years ago as Romania’s first national multidisciplinary cleft...
Following an information meeting with the newly-established federation of Spanish patient support groups, we ran a pilot ‘front-line’ nurse/midwife training course in Bilbao in January 2013. The cleft team were keen to support this and have a long history...
We are approaching the final stages of a process that started more than a year ago – to draw up a set of recommendations on early cleft care. There have been three meetings of our Technical Committee (CEN 424)...