About Us

About the European Cleft Organisation

The European Cleft Organisation was established in July 2007 and is based in the Hague, Holland.  It was set up as a pan European partnership between service users (patients and parents) and health professionals involved with their care.  This is reflected in the membership of the board which comprises patient representatives and health professionals in equal measure (see below).  Central to the organisation’s philosophy is that patients and user groups must work in partnership with health professionals, throughout Europe, to enhance cleft care.

The organisation’s remit comprises:

  1. education projects in countries with the most identifiable needs – especially where babies are likely to be marginalised (e.g. Bulgaria, Romania)
  2. lobbying from internal and external groups for provision of resources for multidisciplinary care
  3. ongoing monitoring of cleft care provision and patient support
  4. development of pan-Europe training symposia for health professionals and patient groups.  

Our Mission

The European Cleft Organisation is a non-profit organisation promoting the advancement of medical expertise and standards of care in the treatment of cleft lip and palate in Europe.  Core beliefs are:

  1. equality of access to care
  2. multidisciplinary approach
  3. involvement of local health professionals
  4. user input in decisions around management of care
  5. promotion of family-to-family support
  6. support for collaborative research into the aetiology (i.e. causes) of clefts of the lip and palate and prevention thereof

The European Cleft Organisation’s unique qualities are:

  1. user led and user involvement
  2. contact with patient groups in 12 countries
  3. non-country specific, pan European
  4. credibility amongst Health Professionals  
  5. strong links into Eastern Europe 
  6. multi-disciplinary board of directors, involving both health professionals, users and lay members.

Our Board and Staff    

Founder members, Gareth Davies and Anton Vorderman, were both born with a cleft lip and palate and have first hand experience of the issues faced by those growing up with a cleft.

group_big.jpg

garethsm.jpg  Gareth Davies, Executive Director and founder member of the European Cleft Organisation and former Chief Executive of UK Cleft Lip and Palate Association (CLAPA).  Nominated lead of the European Network of Cleft Support Organisations (ENCSO) – an informal Eurpean network. 
antonsm.jpg Anton Vorderman, founder member of European Cleft Organisation, previously involved in promotional work for CLAPA and with the Alder Hay Rocking Horse Appeal. 
emmasm.jpg Emma Southby, Lead Specialist Nurse, Guys and St. Thomas’ Healthcare Trust, London.  Also Trustee of CLAPA.  
petersm.jpg Dr. Peter Mossey, consultant orthodontist in Dundee, Scotland, experience of successful networking with EU and WHO representatives.
nigelsm.jpg Mr. Nigel Mercer, President of the British Association of Aesthetic Plastic Surgeons, consultant cleft surgeon for the South West cleft service in the UK.  Nigel has previous experience of working with charities/individuals striving to improve cleft care in Russia.
mariettesm.jpg Mariette Vermeylen-Nuyts, Director of  craniofacial support charity, VAGA, in Belgium.  Key member of the European Network of Cleft Support Organisations (ENCSO).  
  Miriam Winkels-Ryan, Treasurer,  is a former tax specialist with SME management experience.  Currently studying Psychology in The Netherlands.