How we help

OUR PROJECTS

 

IT support

In 2007 the charity received a very generous donation of high-spec second- hand Dell computers which it has been passing on to cleft projects around Europe.  Cleft teams in Bulgaria (Plovdiv) and Romania (Brasov) have benefited enormously from this and the charity  still has more to pass on. 

Health Professional Education

The charity co-funded (with the UK Cleft Lip and Palate Association www.clapa.com) two nurses from Bulgaria to attend three-module specialist cleft nurse training course at Nottingham University between October 2007 and January 2008. 

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With generous support from Transforming Faces Worldwide  the European Cleft Organisation has established some groundbreaking projects in Bulgaria aimed at raising awareness of cleft lip and palate amongst front line health professionals.  Discussions with cleft teams in Bulgaria had confirmed that some babies born with clefts were being given up by their parents because of a lack of information as to what treatment was available.  A two day course for front line health professionals was organised in October 2008.  An extensive range of publicity material, including information packs targeted at medical conferences has also been funded.  

Maternity Unit staff training

Our last workshop in October 2009 set out to teach health professionals three important facts:

  • Clefts are  treatable
  • Babies with clefts can be breastfed or fed with a bottle
  • There are medical specialists in Bulgaria ready to support parents of babies with clefts

Those who attended reported that they completely changed their views about the prognosis for children born with clefts.This transformation in thinking leads directly to more children with clefts being treated wholly, with respect, and sent where they belong – home with their family.

 Patient Support groups

We are currently working closely with the Bulgarian patient support group, ALA, assist them in providing effective support.  We have funded a rebuild of their website.  In March 2009 and April 2010  we ran three-day intensive parent training courses with the UK Cleft Lip and Palate Association that enable parents of children with clefts to provide one to one support to new parents. In more remote areas of the country these trained contacts will also act as local contact points for the cleft teams, using the internet and webcams.

Subject to funding we would like to run the parent training scheme in other countries and are in discussions with local representatives in Romania.

Information for mothers transforms lives

These two siblings in Pleven, Bulgaria, shown here with their mother Tzvetelina, were born with cleft lip and palate.  Their mother is now a volunteer helping other mothers face the fear of having a child born zith cleft lip and palate. "I made up my mind to become a parent contact after I came back zith my first child whose lip had just been operated on," says Tzvetelina. "The moment I closed the front door behind myself, I realized that the fear and embarrassment my family and I went though were due to the unknown." TFW funded the information program that helped Tzvetelina face those fears. "The training course was something like a healing therapy to me, something like purification."

Professional Collaborations  

The charity is a key partner in an EU funding bid (Marie Curie programme: Initial Training Networks)  which brings together 13 eminent research bodies throughout Europe.  The bid seeks funding to improve the understanding of the effectiveness of different approaches to cleft care and also look at potential preventive strategies by examining patterns of prevalence and possible confounding factors such as diet.  A full version of the funding bid can be viewed here .  Should the bid succeed, the charity will be able to host a PhD researcher to ascertain the current level of cleft care in the 9 former soviet bloc EU member states.  With this information we will be able to target and plan our activities more effectively.

Planned Projects

Subject to funding:

Research Co-ordination & Audit
Our AIM is to:  Establish an overview of the availability and quality of cleft lip and palate care in each European country and reach agreement on a standardised set of tools for collecting data both on incidence and treatment outcomes.

We will achieve this by:

  1. collating and pooling data from previous studies (notably the EUROCRAN research project)
  2. seeking funding to host a PhD researcher to verify the accuracy of the above data by making direct contact with personnel involved
  3. evaluating current tools available to monitor incidence and treatment outcomes and making recommendations for a standardized approach
  4. developing, with input from a university research department, a central data collection facility that can be remotely populated by all cleft teams in Europe... a single European database would be a extremely powerful research facility and would enable accurate assessment of varying approaches to treatment across a range of disciplines.

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Country Project Management
Our AIM is to:  Work with identified local cleft teams and help put in place informed referral networks to ensure that every baby born with a cleft, and their family, receives timely support and treatment by a specialist team that includes, in addition to surgery, nursing and psychosocial support, orthodontics and speech and language therapy.  

We will achieve this by:
  1. providing education seminars for those normally present at the birth of a baby (midwives, community nurses, health visitors, paediatricians) on all aspects of early cleft care
  2. encouraging the appointment of, and training of, specialist nurses who would assist in early support and be instrumental in providing future training to the above professionals
  3. training of appropriately vetted parents to provide basic counselling to new parents and extend the reach of the specialist cleft teams by becoming local support contacts
  4. committing funds, where necessary, to increasing provision of non-surgical care on the cleft team (speech, nursing, psychology, orthodontics).  If surgical support is required this may be explored in tandem with other organizations.

Educational/Training/Conferences (non-country specific)
Our AIM is: Promotion of good practice, exchange of ideas and furtherance of knowledge amongst health professionals and self help patient support groups across the whole of Europe

We will achieve this by:
  1. facilitating regional meetings of specialist groups (especially psychologists, nurses, speech and language therapists and orthodontists) to further best practice and development of audit processes amongst those working in similar environments and facing similar challenges
  2. directly supporting exchange visits for above groups, linking teams and exchanging know-how between countries in Eastern, Central and Western Europe
  3. encouraging and directly supporting (where funds are limited)  the participation of appropriate individuals in meetings of the newly-created European Cleft Nurses Special Interest Group
  4. hosting information and education meetings for cleft parent support groups throughout Europe, with seminars on e.g., developments in cleft treatment, lobbying and media strategies, effective  fundraising and organisational governance.