ECO was a founding member of Face Equality International which for the past 5 years has been doing amazing things to try to improve the lives of all those with a visible difference.  They aim to change social attitudes to disfigurement through education, awareness-raising and lobbying.  They have been working with the UN to try to ensure the rights of those with a disfigurement are protected in law. Each year they organise a Face Equality Week and this year's theme , carried over from last year's successful campaign, is "My Face is Masterpiece".  Follow this link to see how you can get involved.

ECO has been invited to develop ties with a a patient led cleft group in India, SIRAT (Cleft Warriors).  The group has a young dynamic membership and are providing support to new families, those with clefts seeking support with aspects of cleft care beyond surgery (speech, orthodontics) and in developing confidence buildiing strategies.  It is also keen to rasie awareness of cleft lip and palate at community level.  They work with local clinicians as well as other NGOs.

ECO and SIRAT established a dialgoue last year with a view to bringing some of the training we have devleoped in Europe to an Indian audience.  Courses that might be most relevant  include

• early cleft care and nursing

• basic speech and resilience training

• training focusing on the challenges faced by individuals with a visible difference and how these can be overcome

• parent support group training, including basic counselling skills for parents to support other parents in a structured way

Our next step is to organise an exploraty trip to India to listen to the specific needs and challenges facing people born with clefts in India and adapt the above for the approaiate delivery in a local setting.  The key attraction of working with SIRAT is that like ECO they place emphasis on patient priorities and address areas beyond surgery and indeed beyond the wals of the hospital.   If you want more infromation on this emerging collaboration and would like to suport the initiative click this link.

The project partners for the Face Equality Training project met for their third face to face meeting in Valencia, Spain on 13 and 14th September 2024.  All partner countries were reprsented at the meeting which took place in a university building in the historic centre of Valencia.  The meeting was devoted to reviewing work progress to date,  getting feedback on the extensive training material developed in the third work package (over 250 pages of lecture notes and exercises) and planning for the final year of the project, including dissemination and showcase events.  We were grateful to our hosts – the Hemifacial Microsomia Assocaiton of Spain for organising the venue and coordinating the meetings, and for arranging some lovely meals out. The project is on course and it was also a good opportunity to get input into the reporting required by Erasmus + at the end of the second year of the project.  Erasmus  + let us know that they felt the proejct was goign well with significant outputs already attained.

ECO has  been developing new training approaches, running joint programmes for health professionals and families. We have brought together our speech, resilience and communication training, with support group training for mixed audiences in Spain (2023) and Romania 2024)

The main part of the programme has focused on speech, communication and resilience, drawing material from the SCR4Cleft course developed as part of an EU funded project (https://scr4cleft.org) . The second part of the training has focused on how parents can support new families with children with clefts in an empathetic and constructive way and also provided some general guidance on how to develop and sustain cleft support groups. More than 20 people attended the Romania event held at the Marie Curie children’s hospital in Bucharest. Participants included a speech therapist from Kiyv, Ukraine, and parents and health professionals from Chisinau, Moldova. Feedback was extremely positive. We are grateful to surgeon Radu Spataru for coordinating the event and also to Ana Schiau, the local speech therapist who helped run the course with trainers Prof Nichola Rumsey and Gareth Davies from ECO

Here is a quote from one of the parents:

Thank you very much for this training day, so important for all families who have children with clefts and/or speech problems! Hopefully all this information can reach more families, centres and professionals who work with our children, improving their quality of life so much. For our part, you have given us a lot of ideas, games, fun ways to teach our little one and to face many situations that she and we can find ourselves in. Thank you very much for everything!

For the first time since the launch of ECO in 2007, we are facing a difficult funding situation.  The world has changed a lot over the past few years, first impacted heavily by resourcing priorities demanded by Covid 19, followed by war in Europe and ever increasing international tensions.  Funders have had to rethink strategies and priorities with many international NGOs taking a hit and having to cut back on programmes.    ECO is no exception and we need to be creative in attracting new income streams during 2024.  We are all in this togethter and perhaps the best way forward is to look at opportunities for collaborative fundraising with other partner organisations, old and new.

In an effort to seek new funding, we are also widening our brief, both in terms of type of work undertaken and our geographical remit. We are focusing more on cleft support group development as this is an area that no one else is currently prioritising and we believe that support groups may be the key to ensuring cleft care is sustainable in low to middle income countries.  What we have learned from our work in Europe, may be of huge relevance globally and we are currently looking at some possible pilot projects with support groups in India and elsewhere.

We will continue to seek funding for our work in Europe and indeed we are building a collaboration with a cleft NGO in Ukraine, Ukrainian Smile.  It is thanks to them that a speech therapist from Kijv attended a training event we ran in Bucharest, in March (see News item). We are hoping to team up with Ukrainian Smile and put in a joint funding bid to help them develop a national cleft centre in Kiyv.  Again in Europe we have this year already joined forces with support groups in Slovenia and Spain to apply for an EU grant to develop tools which will enable support groups internationally to retain sustainability and widen their activites.

We are hopeful that these new initiatives will not only continue to improve cleft care in the areas where we work but also provide new funding opportunites for ECO.

Gareth Davies

Executive Director

We were delighted to pilot our Speech Communication and Resilience project in Valencia, Spain, at the the start of July 2023.  Overall costs were covered by  Smile Train and  the venue  was  provided by the  Luís Alcanyís-Universitat de València Foundation Dental Clinic (FLA-UV).  Thank you!  A mix of around 20 clinicans and parents of children with clefts attended the event which was very well received (see quote below).   The initiative was  promoted by the Interdisciplinary Care Unit for patients with clefts and other craniofacial anomalies of the Speech Therapy Clinic of the University of Valencia.   The course featured international speakers in the field  starting with Mr. Gareth Davies, CEO of the European Cleft Organisation (ECO) followed by Cristina Peris, speech and language therapist from the Speech Therapy Clinic of the FLA-UV, Profesor  Nichola Rumsey,  formerly of the Centre for Appearance Research at the University of the West of England professor at the University of Bristol, developed and presented  the modules on psychological aspects and resilience in cleft patients and their families

Here is a quote from one of the parents:

Thank you very much for this training day, so important for all families who have children with clefts and/or speech problems! Hopefully all this information can reach more families, centres and professionals who work with our children, improving their quality of life so much. For our part, you have given us a lot of ideas, games, fun ways to teach our little one and to face many situations that she and we can find ourselves in. Thank you very much for everything!

ECO has previously run other workshops for parents of children with clefts in Spain – in Valencia in May 2023 and in Barcleona early in 2022.  We are continuing to develop training for parents and for support groups – some of the training  material can be seen here and here.  Earlier in 2023 we were asked to chair a working group Developing and Sustaining Cleft Support Groups by Transforming Faces’ Circle of Cleft Professionals.  The recommendations made by this group can be seen here.

We are delighted to be celebrating the start of a new Erasmus+ funded project – the Face Equality Training project. ECO has been involved in many exciting Erasmus+ funded projects since 2014, as a partner and also as a coordinator.  These projects bring together specialists from a variety of settings (hospitals, NGOs, universities) to develop training programmes that are available through free downloads on each of their respective websites. Recent projects have been tackling adjustment to visible difference (ACT), health and research illiteracy (Euroteq), appearance confidence issues for mothers after having a baby (Body Confident Mums – BCMs), speech and resilience for children and families with a child with a cleft (SCR4Cleft).  We are just kicking off a new project dealing with the challenges faced by people with a visible difference and how training front line hospital staff, NGOs and community workers can help address the difficulties. 

Links to the above project all all found here:

Face Equality Training (FET) https://faceequalitytraining.org/

ACT     https://actnow-erasmusproject.eu/partners/

BCMs   https://bcmeurope.eu/

Euroteq   https://euroteq.nu/

SCR4Cleft  http://scr4cleft.org

We are delighted that despite continuing restrictions with Covid 19 we were able to deliver a training programme to members of the Ficat parent’s group in Barcelona in Saturday 15 January 2022.  The group of 17 was very motivated and eager to participate in the course delivered by ECO Executive Director Gareth Davies and psychologist  Prof Nichola Rumsey.  This was the first time we had run this course live, face to face – we had previously run it online with parents in Slovenia.

The one day course, funded with a grant from Smile Train,  included guidance on providing constructive support to new parents, how to develop resilience in children with clefts – and in their parents – and finally looked at ways of improving effectiveness of support groups in terms of lobbying, communications and fundraising.

Children with clefts in Barcelona do not have access to all aspects of a multidisciplinary team, in particular in the areas of speech therapy and psychology.  At the end of the day we discussed ways in which Ficat can campaign and lobby for better provision of services.  Funding is urgently needed, especially to ensure all children that need it receive speech therapy.  ECO will continue to work with, and advise,  Ficat to help all families get the support they need.

We are delighted to announce the continuation and expansion of our new online training.  Mid May we started a 5 module online specialist cleft nursing training course for nurses in Russian – targeting Russia and neighbouring countries.  More than 70 health professionals joined the  first session on 18 May and feedback during the event was very positive.  The training  is based around our Early Care Training Programme developed with a grant from the EU Erasmus programme in 2017 www.cleftectp.com.  We have been able to redevelop this and make it available as a live online training programme thanks to a grant from Smile Train who are keen to follow the course.

Trainers are Gareth Davies, Executive Director of ECO, and Kostadinka Bojikova, specialist cleft nurse from Plovdiv Bulgaria.  Kostadinka, who we funded to attend specialist cleft nurse training in the UK in 2007, has been a key member of our training team over the past 10 years.

As a result of the pandemic we are moving more and more training online. It is a challenging, but necessary, switch moving from face to face to online training.  We are using  an online simultaneous interpretation platform (VoiceBoxer) to deliver the training in real time, ensuring sessions run smoothly and participants are able to fully engage.

On 19 May we begin our first online course for a parent group.  We are delivering this in Slovenian for the cleft parent support charity in Slovenia and topics covered over 4 weeks will  include guidance on providing constructive support to new parents, how to develop resilience in children with clefts – and in their parents – and finally looking at ways of improving effectiveness of support groups in terms of lobbying, communications and fundraising.

The European Cleft Organisation along with cleft specialists across Europe are aware that the current health crisis is having a significant impact on surgery and treatment of babies and children born with clefts.  In many cases regular clinic appointments have had to be postponed and surgery has been put on hold until our health systems have regained hospital capacity and until it is safe to carry out planned surgery.  We are currently working with our health professional colleagues in trying to ascertain the exact situation in each country.  We are also keen to ensure that hospitals are aware of the needs of infants and children with clefts so that once the current crisis is over, cleft treatment will be prioritised according to need and age and taking into account a consensus opinion from cleft clinicians.  This consultation with professional cleft colleagues throughout Europe is ongoing.

From such consultations, we hope to i) develop resources that help and support cleft teams across Europe to prioritise and deliver care, as things start returning to normal after COVID 19 ii) learn how we can all prepare better for the impact of any future pandemic on cleft care.