European Cleft Organisation - ECO

Startpagina
Nederland
The Hague
European Cleft Organisation - ECO

The European Cleft Organisation was launched in 2007 and is based in The Hague, Holland.

The European Cleft Organisation strives to ensure all those affected by cleft lip and/or cleft palate have access to high quality care and enjoy equal opportunities in our European societies. 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 board which comprises patient representativ

es and health professionals in equal measure. Pending funding our priority activities over the next five years are to continue our education projects in countries where babies are likely to be marginalised and to develop Europe wide training programmes for health professionals and patient groups. We will also continue our lobbying activities to get cleft lip and/or palate on the health agendas of individual governments and the European Union. The charity currently employs two paid members of staff who as well as coordinating overall activities are directly involved with country projects and training programmes.

15/05/2026

During the Face Equality Week, ECO supports Face Equality International Seen And Served campaign to ensure everyone has a seat at the table.

14/05/2026

During Mental Health Awareness Month, we recognise the psychological and emotional experiences of people born with cleft lip and/or palate, and of their parents and families. Clefts come in many forms and may affect appearance, feeding, speech, hearing, and development — shaping daily life from infancy into adulthood.

Growing up with a cleft can bring challenges to mental health and wellbeing, including concerns about appearance, communication, social relationships, education, and the burden of long-term treatment. At the same time, research shows wide variation in individual experiences. Many people develop strong resilience, empathy, and positive coping strategies, particularly when they are supported by family, peers, and coordinated multidisciplinary care.

Mental wellbeing is not determined by the severity of a cleft, but by psychological, social, and environmental factors. Supporting effective communication, fostering self-esteem beyond appearance, encouraging open conversations within families, and ensuring access to psychological and speech-language support are all key to positive outcomes. This month, we highlight the importance of addressing mental health as an integral part of cleft care — from early childhood through adulthood.

09/05/2026

On Europe Day, we celebrate collaboration across borders — and the shared commitment to improving care for people born with a cleft and craniofacial conditions.

The European Cleft Organisation is the only international cleft-focused NGO working across Europe. We have ran, supported and participated in projects in almost 20 European countries, connecting healthcare professionals, patients, and families to share knowledge and strengthen collective impact.

On Europe Day, we reaffirm our belief that working together across countries and disciplines leads to better patient experiences and better outcomes — and that strong European cooperation is essential to achieving equitable cleft and craniofacial care for all.

07/05/2026

We were delighted to learn and share about FICAT’s participation in the breastfeeding postgraduate programme at The Autonomous University of Barcelona (UAB), where they joined a roundtable on breastfeeding in babies with cleft.

Sharing lived experience directly with healthcare professionals in training is incredibly valuable. It helps ensure that families’ real needs, challenges, and practical knowledge become part of clinical understanding from the very beginning.

This is also a powerful example of the strength of patient groups. Patient organisations do much more than offer support — they help shape better care, build bridges between families and professionals, and make sure the patient voice is present where it matters most.

A warm thank you to everyone involved — the organisers, the healthcare professionals for their engagement and thoughtful questions, and especially the volunteers whose commitment makes this kind of representation possible.

This is how stronger cleft care communities are built across Europe.

05/05/2026

May is a Mental Health Month and we would like to take this opportunity to remind you about the survey on mental health care availability and the needs of patients with craniofacial conditions.

We kindly encourage you to participate if you have a craniofacial condition or are a parent of a child (young or adult) with such a condition and/or share it with others who may want to contribute.

A group of researchers within the European Reference Network CRANIO (www.ern-cranio.eu) are developing European recommendations for mental health care in craniofacial teams (cleft lip and/or palate and other rare craniofacial conditions). To ensure that the recommendations reflect real needs, they are collecting information from people with lived experience. For the results of the survey to be useful, we need to gather as many responses as possible.

ECO has been involved in developing this survey.

The survey is available in several European languages, is anonymous and does not include any personal information that could identify the respondent. Answering the survey should take a maximum of approximately 20 minutes.

The links to the survey and the posters for sharing, can be found at: https://www.ern-cranio.eu/post/help-us-improve-psychological-services-in-craniofacial-care-a-european-survey-of-patients-and-pare

28/04/2026

A survey about mental health care availability and the needs of patients with craniofacial conditions

A group of researchers within the European Reference Network CRANIO (www.ern-cranio.eu) are developing European recommendations for mental health care in craniofacial teams (cleft lip and/or palate and other rare craniofacial conditions). To ensure that the recommendations reflect real needs, they are collecting information from people with lived experience and would greatly appreciate your input.

ECO has been involved in developing this survey.

If you have a craniofacial condition or are a parent of a child (young or adult) with such a condition, we kindly encourage you to participate and share it with others who may want to contribute. For the results of the survey to be useful, we need to gather as many responses as possible.

The survey is available in several European languages, is anonymous and does not include any personal information that could identify the respondent. Answering the survey should take a maximum of approximately 20 minutes.

The links to the survey and the posters for sharing, can be found at: https://www.ern-cranio.eu/post/help-us-improve-psychological-services-in-craniofacial-care-a-european-survey-of-patients-and-pare

15/04/2026

Not all support happens in hospital corridors — some of the most meaningful connections come from sharing life stories with other who truly understand. That’s the heart of SUHUPO ry Suomen Huuli-suulakihalkiopotilaat SUHUPO ry , a Finnish association supporting people and families affected by cleft lip and palate.

For over three decades, SUHUPO has created spaces for people to connect, encourage one another, and exchange practical insights into living with cleft conditions — from feeding challenges and speech development to school life and adulthood. Their volunteer-driven approach makes sure that support is personal, genuine, and grounded in lived experience.

By nurturing peer networks that stretch from small towns to bigger cities, SUHUPO help individuals and families feel truly seen and supported. It’s a great reminder that share experience builds resilience and hope.

The association’s board reflects the diversity of the cleft community: mothers inspired by their children’s journeys, adults born with clefts who now guide others, healthcare professionals improving coordination of care, and volunteers raising awareness through social media, photography, and public outreach. Together, they ensure cleft voices are heard across the country.

By visiting maternity clinics, hospitals, and schools, SUHUPO spreads knowledge and reduces stigma — strengthening not just individuals, but society’s understanding of cleft conditions as a whole.

In our ECO Series, we are proud to highlight SUHUPO as a shining example of how community, lived experience, and advocacy come together to make sure no one is left alone.

For more information about SUHUPO, visit their website: https://www.halkio.com/

07/04/2026

On World Health Day 2026, WHO unites and mobilises the world under the theme "Together for health. Stand with science."

Across Europe, differences in standards, availability of multidisciplinary teams, and continuity of long-term follow-up mean that outcomes can depend on where a child is born rather than on what the evidence tells us is best. That is why ECO works alongside patients, health professionals, and policy makers to ensure that local protocols and government policies reflect best practices in cleft care.

We also actively promote user engagement in research and service development, ensuring that individuals with lived experience play a meaningful role in setting research priorities and serve in advisory capacities from project planning through to the dissemination of findings. Their input enhances the relevance, inclusivity, and long-term value of cleft-focused initiatives. Healthcare is most powerful when it is built with the people it is meant to serve.

On this World Health Day, we stand with science — and we stand with every family navigating the cleft journey.

03/04/2026

During World Health Worker Week, we recognise and thank the dedicated health professionals who support people born with a cleft at every stage of life.

Cleft care relies on the commitment of multidisciplinary teams — including surgeons, anaesthesiologists, speech and language therapists, orthodontists, nurses, psychologists, ENT specialists, dentists, social workers, and many others. Their expertise, collaboration, and continuity of care make a lasting difference for children, adults, and families.

This week, we celebrate the skill, compassion, and resilience of health workers across Europe who work in cleft and craniofacial care. Your dedication helps ensure better patient experiences, stronger outcomes, and a higher standard of care for all.

10/03/2026

Today, we are featuring German self-help association: Selbsthilfevereinigung für Lippen-Gaumen-Fehlbildungen e.V. 🌟

Every journey begins with a moment of uncertainty. For families in Germany learning that their child will be born with a cleft lip, cleft palate, or Pierre Robin sequence, that moment can feel overwhelming. The Selbsthilfevereinigung für Lippen-Gaumen-Fehlbildungen e. V. – Wolfgang Rosenthal Gesellschaft (WRG) is there to ensure families do not face it alone.

Founded in 1981 by parents who turned their own experiences into action, the organization grew from a small self-help initiative into a nationwide association offering guidance, understanding, and connection. At its heart is the belief that shared experience can empower — whether you are an expectant parent, a young person growing up with a cleft, or an adult reflecting on your journey.

Through counselling, educational materials, seminars, and regional networks, the association supports people at every stage of life. Parents help parents, questions are met with honesty, and long-lasting bonds are formed through mutual trust and lived experience.

Beyond individual support, the organization works to raise public awareness and advocate for holistic care that addresses not only physical needs, but emotional and social well-being. A reminder that while every story is unique, no one has to walk this path alone.

To mark the organization’s 20th anniversary in 2001, WRG reached out to other cleft charities in Europe and invited representatives to attend a meeting at their headquarters near Wetzlar in Germany. Everyone realized that the needs of families with children with clefts are the same across Europe and efforts were made to continue working at a cross European level, as ECO is still doing today.

Discover more about their work and how they empower families: https://www.lkg-selbsthilfe.de/”

Adres

Verrijn Stuartlaan 28
The Hague
2288

Website

https://europeancleft.org/donate

Meldingen

Wees de eerste die het weet en laat ons u een e-mail sturen wanneer European Cleft Organisation - ECO nieuws en promoties plaatst. Uw e-mailadres wordt niet voor andere doeleinden gebruikt en u kunt zich op elk gewenst moment afmelden.