Overview of organisation
The European Cleft Organisation is a not for profit NGO based in the Netherlands which aims to improve the lives of all those born with clefts. It was founded in 2007 by Gareth Davies, ex CEO of CLAPA UK and Anton Vorderman, brother of Carol Vorderman, living in the Netherlands. Both founders were born with clefts. Gareth Davies remains the Executive Director and is the only paid staff member.
Mission and vision
“Every individual with a cleft should have access to appropriate healthcare, social care and education so that they can enjoy equal opportunities in life”
Aims of organisation
- Capacity Building – through training, strengthening organizations’/hospitals’ ability to deliver quality health care and support for families, children and adults with a cleft
- Policy Change – developing agreed minimum cleft care standards and lobbying stakeholders to work with governments to formulate initiatives which increase access to quality health care and equal opportunities for families, children and adults with a cleft
- Collaboration – networking with organizations to exchange information, share resources, and enhance each other’s capacity to advance the cause of families, children and adults with a cleft
- Awareness Raising – communicating information which improves understanding of the challenges faced by families, children and adults with a cleft3
Examples of progress made or particular achievements
- Nursing, early care, psychosocial training in Bulgaria, Latvia, Lithuania, Romania, Serbia, Slovenia, Spain - 600 health professionals trained directly by ECO
- Since 2014, partnering in EU projects, developing training programmes with partners in 15 countries – over 2000 people trained during course developments in Bulgaria, Cyprus, Estonia, Greece, Ireland, Italy, Latvia, Lithuania, Norway, Romania, Serbia, Slovenia, Sweden, Turkey and the UK.
- Co-hosting major educational conferences in Bulgaria 2014 and Romania 2017
Research, signposting, setting standards
- European Cleft Gateway – online register and information resource for families and health professionals (www.gateway.europeancleft.org). Currently being redeveloped
- Sponsoring and being pivotal in producing Standards of early cleft care through the European Committee for Standardisation http://europeancleft.org/download-guidelines/
- Development of international programme standards in collaboration with 5 major global cleft NGOs https://www.worldcleftcoalition.org/
- Participation in EU Research programmes: European Science Foundation ‘EurocleftNet’, COST Action Appearance Matters, COST Action Equality in Access to cleft care - www.ecce.nu
Opportunities to get involved
We rely on volunteers to help run our training programmes around Europe and can normally fund expenses for projects we are given grants for. We are keen to develop a ‘bank’ of potential trainers in the areas of nursing and psychology as these disciplines in relation to cleft care are often lacking in the countries we work in.