European Cleft Organisation - ECO

12/08/2026

On International Youth Day, we want to bring attention to an often overlooked stage of cleft care: the transition from paediatric to adult services.

For young people born with a cleft, adolescence and early adulthood bring important changes — in health needs, education, independence, and identity. Yet many experience gaps in care when moving from child-focused services to adult healthcare systems.

A well-planned transition supports continuity of care, informed decision-making, and confidence in managing one’s own health. On this day, we recognise the importance of coordinated transition pathways that listen to young people’s voices and support them as they move into adult cleft and craniofacial care.

06/08/2026

During World Breastfeeding Month, we recognise breastfeeding as one of the most effective ways to support infant health and survival. Supported by WHO, UNICEF, Ministries of Health, and civil society partners, World Breastfeeding Week is observed in the first week of August to promote the environments and support systems that help families feed their babies.

For some babies born with a cleft lip and/or palate, exclusive breastfeeding may be challenging or not possible due to feeding difficulties. This can be distressing for families — but it is important to know that there are safe and effective alternative ways to ensure healthy nutrition and growth in the early months of life.

Healthcare professionals who care for babies and families affected by cleft play a vital role as trusted sources of information, guidance, and reassurance. This is why, information on early feeding, feeding assessment, and family support is included in the Early Cleft Care Training Programme (ECCTP) curriculum, helping professionals feel confident when advising families. The programme covers a range of feeding options and helps establish a structured early care pathway — ensuring that every baby born with a cleft receives the nutrition they need to thrive, regardless of the feeding method used.

The theme for 2026 is Breastfeeding for a Sustainable Start in Life: Strengthen What Works

04/08/2026

ACPA has launched a new Self-Advocacy Series designed for individuals and families affected by cleft and craniofacial differences. Running from June 2026 through early 2027, this series will provide practical tools, personal insights, and empowering conversations focused on navigating healthcare, education, relationships, transitions to adulthood, and self-advocacy at every stage of life.

Led by individuals with lived experience, these online events aim to foster confidence, connection, and community. Explore the upcoming topics at https://acpacares.org/self-advocacy-webinar-series/ below and register for free—exact dates, additional details, and registration are added as they become available.

Recordings are posted within a week following each event.

ACPA is proud to launch a new Self-Advocacy Webinar Series designed for individuals and families affected by cleft and craniofacial differences. Running from June 2026 through early 2027, this series will provide practical tools, personal insights, and empowering conversations focused on navigating....

31/07/2026

Throughout July, we have been proud to highlight the work of different patient organisations as they raise awareness and support people born with a cleft and other craniofacial conditions in their own communities and languages.

Today, on the final day of Cleft and Craniofacial Awareness and Prevention Month, we are featuring FICAT (Catalonia, Spain) and one of its most valuable resources for families: its practical guides for feeding and speech.

The Feeding Guide for Babies with a Cleft provides parents with reliable information and practical advice during one of the most important and often challenging stages of early life. The Speech Guide offers practical strategies, exercises and expert guidance to support speech development for children born with a cleft palate.

These resources are the result of close collaboration between healthcare professionals and the patient community—demonstrating how shared expertise can empower families with the knowledge and confidence they need throughout their journey.

At the European Cleft Organisation, we believe that access to clear, evidence-based information is an essential part of high-quality cleft care. Resources like these help families feel informed, supported and better prepared from the very beginning.

Congratulations to FICAT and all the healthcare professionals and volunteers who contributed their expertise to creating these invaluable resources for families. 💙

29/07/2026

We speak many languages—but we are stronger together

Every country in Europe has its own healthcare system, its own challenges and its own successes. Some countries have excellent models of multidisciplinary care. Others have developed unique solutions to cover gaps in care. Some are still working to improve access to specialist services or strengthen support for families. While the challenges may differ, no country has to face them alone.

Across Europe, healthcare professionals, patient organisations and families are learning from one another. An innovative approach developed in one country may inspire improvements in another. Educational resources can be shared and adapted across languages. Good practice can become common practice when knowledge is exchanged openly.

Individually, the cleft community in each country may be relatively small. Together, however, we represent a powerful European network. By collaborating across borders, we can develop guidelines, organise training, support research, strengthen patient organisations and advocate more effectively for equitable, high-quality cleft care everywhere.

Different languages. Different healthcare systems. One shared goal: ensuring that every person born with a cleft has the opportunity to receive the care and support they need to thrive.

Because collaboration across borders helps improve care for everyone.

28/07/2026

SUHUPO ry shares the deeply personal story of its Chair, Jaana—who was born with a cleft and is now also the mother of a daughter born with a cleft.

Reflecting on her own childhood, Jaana speaks openly about the lasting effects of bullying and the years it took to accept herself. She also shares how becoming a mother changed her perspective, helping her realise that the qualities she saw in her daughter—beauty, strength and uniqueness—had always been true of herself as well.

Her story is a powerful reminder that the impact of a cleft extends far beyond medical treatment. Confidence, self-acceptance and emotional wellbeing are shaped by the understanding, encouragement and support people receive throughout their lives.

Thank you to Jaana for sharing such an honest and inspiring story, and to SUHUPO for reminding us that every child deserves to grow up in a world where they never have to learn to love themselves all over again. 💚

Tänään jaamme SUHUPO ry:n puheenjohtajan Jaanan ajatuksia elämästään halkion kanssa.

"Nuoruuteni halkion kanssa ei ollut aina helppo. Koulukiusaaminen jätti jälkensä itsetuntooni, ja pitkään minun oli vaikea hyväksyä itseäni sellaisena kuin olen. Yläasteikäisenä päiväkirjani sivut täyttyivät hirveän rumista teksteistä itsestäni.

Oli myös aika, jolloin ajattelin, etten koskaan halua omia lapsia. Pelkäsin, että lapseni syntyisi halkion kanssa ja joutuisi kokemaan samoja asioita kuin minä olin kokenut.

Elämä kulki kuitenkin toista reittiä. Viisi vuotta sitten sain esikoistyttäreni, jolla on myös halkio.

Katsoessani täydellistä ja kaunista tytärtäni olen vuosien varrella oppinut häneltä jotain hyvin tärkeää. Hänessä ei ole kerrassaan mitään vikaa, miksi minussakaan siis olisi? Olen juuri sellainen kuin minun kuuluukin olla, kaunis omalla uniikilla tavallani 💚

Usein ajattelen, että ehkä oli tarkoitettu, että juuri minä saan halkiolapsen. Ilman hänen syntymäänsä en tiedä, olisinko koskaan tajunnut näitä asioita itsestäni. Hän on opettanut minulle olemassaolollaan tämän kaiken.

Samalla olen saanut mahdollisuuden antaa omalle lapselleni jotain, mitä olisin itse nuorempana tarvinnut: varmuuden siitä, että hän on hyvä, kaunis ja arvokas juuri sellaisena kuin on.

Tänään kansainvälisenä halkiotietoisuuspäivänä haluan muistuttaa, että halkion vaikutukset voivat ulottua paljon leikkauksia ja hoitoja syvemmälle. Siksi tarvitsemme tietoa, ymmärrystä ja tietenkin vertaistukea kaikille halkiollisille.

Toivon, että tyttäreni saa kasvaa maailmassa, jossa hänen ei tarvitse opetella aikuisena rakastamaan itseään uudelleen 💚 Haluan omalla esimerkilläni opettaa hänelle, että halkio ei tee hänestä yhtään sen huonompaa. Se on vain yksi osa häntä, joka tekee hänestä juuri hänet, täydellisen ainutlaatuisen ihmisen❤️

Hyvää halkiotietoisuuspäivää kaikille halkiollisille ja heidän läheisilleen 💚💛

Jaana
SUHUPO ry:n puheenjohtaja,
halkioäiti ja halkiollinen"

Kuva: Kati Meripuu

27/07/2026

Throughout July, we are proud to highlight the work of our member organisations as they raise awareness and strengthen support for people born with a cleft and other craniofacial conditions in their own communities and languages.

As part of Cleft and Craniofacial Awareness and Prevention Month, the association Udruga Osmijeh from Croatia is celebrating the many partnerships that have helped transform awareness into action. Over the past three years, sports clubs, healthcare institutions, universities, cultural organisations, businesses and public figures have joined forces to support children born with a cleft and their families.

These partnerships are about much more than events or awareness campaigns. They send a powerful message that every child deserves to be seen, accepted and included. By bringing together healthcare professionals, athletes, artists, educators and community leaders, Udruga Osmijeh is helping to challenge misconceptions, raise awareness and create a more inclusive society.

24/07/2026

On World Cleft Day, FICAT celebrates the strength, resilience and uniqueness of children born with a cleft, while reminding us that a cleft is much more than a visible difference. Behind every scar is a story of courage, determination, love and hope.

Check out the sweetest video where the children are sharing, in their own words, what living with a cleft means to them!

At the European Cleft Organisation, we believe that raising awareness is not only about improving healthcare—it is also about building a society where every child feels accepted, included and valued for who they are.

Thank you, FICAT, for helping create a world with greater understanding, greater inclusion and more reasons to smile. 💙

23/07/2026

Following Gareth Davies’ recent honour from His Majesty King Charles III, the French newspaper Midi Libre has published a feature celebrating his remarkable journey and lifelong commitment to improving the lives of others.

The article traces Gareth’s career—from his work in human rights and support for disadvantaged communities, to becoming the first Chief Executive of CLAPA, and later co-founding the European Cleft Organisation (ECO) in 2007.

The article also highlights another of Gareth’s passions—photography—which continues to enrich the local community where he and his wife Anna have made their home.

As we mark Cleft and Craniofacial Awareness Month, we are especially pleased to see Gareth’s story reaching new audiences, raising awareness both internationally and within the local community Gareth now calls home.

Every conversation, every article and every shared story helps more people understand the challenges faced by those born with a cleft and the importance of access to high-quality care to ensure that everyone has a chance to live a fulfilling and inspiring life.

22/07/2026

What patient organisations can really do.

Many people think patient organisations exist simply to bring patients and families with similar conditions together. While feeling connected to others with shared experiences is important, the impact of patient organisations reaches much further.

Patient organisations help families find reliable information, provide peer support and ensure that no one has to navigate the cleft journey alone. They advocate for better care, contribute to public awareness, support research, translate complex medical information into accessible language and give patients and families a voice in shaping healthcare services.

One of the greatest strengths of the cleft community is the close collaboration between families, patients and healthcare professionals. Clinicians bring medical expertise. Patients bring lived experience and additional energy. Both are committed to the same cause. Together, they can identify unmet needs, improve services, develop educational resources and help shape policies that truly reflect what matters most to families.

Because better care is built through partnership—and when patients and professionals work together, everyone benefits.