It is hard to believe that we are celebrating our 10th anniversary. Although it does seem a long time since a small group of us met in Anton Vorderman’s front room in the Hague to discuss ECO’s remit and how we were going to begin to tackle the huge inequalities in cleft care across Europe. We had no certainty of funding, yet we were committed, driven and able to count on many friends, colleagues and supporters to help us embark on our ambitious mission.
Over the coming weeks we will be telling some of our stories on our website – personal accounts from health professionals, individuals and families that we have been privileged to work with over the years. We are starting off with a look back at our huge achievements over the years
10 years of ECO – Some of the Milestones and Highlights
The European Cleft Organisation (ECO) was founded and we held our launch party at the Kurhaus Hotel, in The Hague, The Netherlands on the 6th of July.
ECO and CLAPA UK jointly fund the travel and training of two nurses from Bulgaria. They attend a specialist cleft nursing course at Nottingham University and pass with flying colours.
A large consignment of computers are donated to ECO for use in cleft clinics in Eastern Europe.
ECO wins funding from Transforming Faces Worldwide (TFW) in Toronto, Canada to establish a two year training project in Plovdiv, Bulgaria for health professionals and parents.
ECO, together with local Bulgarian support group ALA, produce a survey for UNICEF Bulgaria, which confirms fears that nearly 40 per cent of parents of children born with clefts were advised to leave their child in an orphanage. This shocking report helps us secure funding for future work.
ECO undertakes it’s first exploratory visit to Romania and is invited back to present at the Congress of Romanian Paediatric Surgeons in 2010.
ECO begins work on a set of guidelines on early cleft care with the European Standards Agency in Brussels (CEN) involving experts from across Europe.
ECO wins funding, again from TFW, for a series of projects in Romania supporting health professionals in Iasi, Brasov and Bucharest.
ECO brings cleft team members from Romania and Bulgaria to the International European Cleft Congress in Salzburg, Austria
ECO is a successful partner in securing funding from European Science Foundation to set up the EUROCleftNet programme, which aims to support research into the treatment and prevention of clefts.
ECO starts work on building a European Cleft Gateway, an information hub about cleft services across Europe, which is hosted on the ECO website, as part of its commitment to the EUROCleftNet programme.
ECO leads a meeting at the European Parliament in Brussels with an impressive delegation of speakers, invited by MEP Sean Kelly. With the aim to get clefts included in the 2020 Horizon EU health programme.
ECO provides training in Bilbao, Spain for nurses and midwives at the invitation of University Hospital Cruces.
ECO organizes the first major cleft research conference in Plovdiv, Bulgaria, bringing clinicians and researchers from eastern and western Europe together for the first time to compare best practice, with European Science Foundation funding.
The Bulgarian National Cleft Nurse Network is launched with ECO’s support– jointly funded by ECO and local partners ALA. This network provides support and feeding advice to families across Bulgaria in the first few days following their baby’s birth to help prevent the abandonment of children born with cleft.
ECO is a partner and management member of Appearance Matters, a major EU funded COST programme seeking to educate and challenge perceptions around visible difference and promote the need for psychosocial support as a component of cleft care.
ECO wins two Erasmus + European grants, Face Value and When Looks Get in the Way, partnering with 7 other European organisations to develop on line training courses for health professionals and NGOs.
ECO undertakes an exploratory mission to Lithuania and exploratory talks with the cleft team in Vilnius.
The ECO Early Cleft Care Guidelines are finally approved by the European Agency for Standardisation (CEN). These are the first ever set of accredited cleft care guidelines at a European level.
ECO trains health professionals in Lithuania about cleft nursing support and psychosocial awareness issues.
The first ever European Cleft Nursing conference is organized by ECO in Bucharest, Romania. Delegates from all over Europe and beyond, including South America, attend. It is funded by EUROcleftNet.
ECO wins a third Erasmus+ grant – IHEM – to investigate the impacts of having a cleft in the school environment
ECO undertakes an exploratory trip to Latvia and subsequently runs a psychosocial and cleft nurse training programme in Riga, followed by a workshop for parents seeking to set up a parent support group.
Partners in Bulgaria undertake a survey to measure the impact of ECO and the Bulgarian National Cleft Nurse Network. The number of parents being advised to abandon their children has reduced from nearly 40% to 27% in 5 years. Still far too high but we are on the right track.
ECO undertakes an exploratory mission to Serbia and talks with the Serbian government to promote the Early Care Cleft Guidelines.
ECO organises a major workshop in Brussels to examine implementation of the Early Cleft Care Guidelines. Delegates include representatives from the Serbian Health Ministry, MEPs, leading clinicians in cleft care and patient representatives.
ECO organises and runs a psychosocial and cleft nurse training programme in Nis, Serbia and undertakes an exploratory mission to Greece.
Both the Face Value and When Looks projects are completed with training material now online.
ECO appoints a Training Manager, specialist cleft nurse Emma Southby, to oversee and roll out training across Europe.
ECO launches a formal 2 year Partnership Programme which provides a more structured format for our training initiatives.
ECO attends World Cleft Congress in Chennai and co-chairs an NGO resource development day.
ECO is asked by global NGOs to develop a set of ethical guidelines to be followed by all NGOs working in Cleft Care. 6 leading international cleft charities are supporting ECO in this role under the umbrella of the World Cleft Coalition.
The COST Appearance Matters programme is successfully completed.
A new improved Cleft Gateway is launched. It has been rebuilt with tailor made search facilities for patients, clinicians and researchers and is now set to become a global model for presenting cleft resource data.
ECO wins new EU COST Action funding to roll out a programme of evaluating and improving cleft care across Europe over 4 years.
ECO wins a new EU Erasmus+ project grant focusing on early cleft care training with partners in 5 countries.