Cleft Lip and Palate Action (CLAPA)

Who we are

The Cleft Lip and Palate Action (CLAPA) is the national charity for people affected by cleft lip and palate in the United Kingdom.

CLAPA supports people affected by cleft to take control of their journey, connect with others, and use their voices to impact the future of care. Our vision is that no one affected by cleft lip and palate in the United Kingdom will go through their journey alone.

CLAPA’s key services include:

Vibrant social media channels which promote positivity, bust myths and

celebrate differences.

Online support groups moderated by trained volunteers provide an instant

connection for those looking for an informal support network.

Regular online events give people the chance to talk about their

experiences and worries and hear from others at all stages of the cleft

journey.

Confidential one-to-one support provided by trained volunteer patients

and parents who reassure those most in need that they can cope with

whatever lies ahead.

Information on cleft led by our community, reflecting their experiences and

emotional needs as well as medical facts.

Counselling to enable those feeling overwhelmed, anxious, or depressed to

work on any issues in their lives.

Support and signposting for those with those with complex enquiries.

A Children and Young People’s Council and several targeted focus groups

who meet to share their thoughts and experiences, helping to improve our

support services as well as cleft research and NHS care.

Mentoring to help young people address cleft-related challenges and

develop coping and communication skills.

Camp CLAPA adventure weekends, a Penpals project and other

opportunities for children and young people to connect and improve

mental health and wellbeing.

A consultancy service for researchers and health professionals which

connects their work with our community and enables Patient and Public

Involvement (PPI).

A feeding service that supplies 15,000 subsidised items of specialist

equipment for babies born with a cleft each year, including free of charge

items for new and vulnerable families.

CLAPA believes that every smile tells a story. From expectant parents dealing with a diagnosis to adults struggling to get the care they need, we believe that these stories and the people in them should shape everything we do.

Cleft lip and palate has a wide range of causes, effects and outcomes. No two families will be impacted in the same way. The journey through treatment and beyond isn’t easy, but we believe that with the right help and support, everyone affected by cleft can be happy with how their story unfolds.

As the only national support charity for cleft in the UK, we believe it’s our responsibility to put the needs of patients and parents first, and to fight for the best possible cleft care and outcomes for every generation.

What is Cleft Lip and Palate?

Early on in pregnancy, different parts of the face form and come together just above the top lip. If this doesn’t happen quite as it should, the result is a gap or ‘cleft’ in the upper lip, the palate (roof of the mouth), or both. It’s usually caused by a mix of genetic and environmental factors coming together in a way which can’t be predicted or prevented. A cleft can affect feeding, hearing, speech, teeth placement and more. The treatment pathway can last 20+years, including several surgeries. Around one in 700 people are born with a cleft – that’s 1,200 each year in the UK alone.

Our culture and values

Our vision

No one affected by cleft lip and palate in the United Kingdom will go through their journey alone.

Our purpose

CLAPA is the national charity for people affected by cleft lip and palate in the United Kingdom. We support people to take control of their journey, connect with others, and use their voices to impact the future of care.

Our values

Inclusive

Everyone affected by cleft in the UK, regardless of background, identity or socioeconomic status, should be able to find a warm and welcoming community with CLAPA. We value all voices and want everyone to see themselves reflected in our work.

Trusted

We passionately believe in doing what is best for the UK cleft community. Their needs and voices are at the front and centre of everything we do. We take responsibility for our mistakes and use them as chances to learn.

Adaptable

We seek authentic feedback to help us raise the bar in everything we do. We don’t stay stuck in our ways. We follow the evidence, try new things, and change with the times.

Collaborative

We work best when we work together, whether this is as a staff team, as a community, or in partnership with others.