Support and Resources

What is a cleft lip and/or cleft palate?

A cleft lip and/or cleft palate is a condition present at birth (congenital), characterised by a gap (cleft) in the tissues of the upper lip and/or palate in the roof of the mouth. Clefts can be one sided (unilateral) or two-sided (bilateral) and can involve the full height of the lip/palate (complete) or part of the height (incomplete). Clefts can occur by themselves (isolated) or in association with additional congenital anomalies or with syndromes. The cause of a cleft is not completely understood but likely involves an interaction of environmental factors and genetic factors.

A multidisciplinary team of highly trained healthcare professionals provides care for people born with a cleft. Cleft care aims to help people with physical, functional (speech, hearing and eating) and psychological aspects of having a cleft. Often a staged treatment pathway is recommended but this is tailored to the specific type of cleft and will be explained in detail by a member of the cleft team.

To find out more about cleft lip and/or palate see these resources:

CLAPA - what is a cleft lip and palate

https://www.clapa.com/what-is-cleft-lip-palate/

NHS - cleft lip and palate

https://www.nhs.uk/conditions/cleft-lip-and-palate/

UK Government - cleft information for parents

https://www.gov.uk/government/publications/cleft-lip-description-in-brief/cleft-lip-information-for-parents

What is a craniofacial condition?

Craniofacial conditions can be present at birth (congenital) or can develop after birth (acquired) and are characterised by differences in the formation, development and growth of the face and skull. There is a broad range of conditions and examples include craniosynostosis and craniofacial microsomia. Craniofacial conditions can occur by themselves (isolated) or in association with additional congenital anomalies or with syndromes.

A craniofacial team, consisting of highly trained multidisciplinary healthcare professionals, provides care within a specialised tertiary craniofacial centre. Craniofacial care aims to help people with physical, functional (speech, hearing and eating) and psychological aspects of having a craniofacial condition. Often a staged treatment pathway is recommended but this is tailored to the specific type of craniofacial diagnosis and will be explained in detail by a member of the craniofacial team.

To find out more about craniofacial conditions see these resources:

BAPRAS - craniofacial surgery

https://www.bapras.org.uk/public/patient-information/surgery-guides/craniofacial-surgery

Organisations providing support for individuals and families affected by cleft and craniofacial conditions based in the United Kingdom are detailed below. For more information, please follow the links to their websites.

CLAPA

Since 1979, The Cleft Lip and Palate Association (CLAPA) has been the only national charity dedicated to all those affected by cleft lip and/or palate in the United Kingdom.

We reach out to families from the moment of diagnosis and help them through any difficulties they have before and after the birth of their child by providing a specialist feeding service as well as targeted information and a national network of trained volunteers providing one-to-one emotional support and online events. This first contact is the start of what we see as lifelong support of children born with a cleft and their families, from infancy through to adulthood.

We work closely with the nine specialist cleft teams in the UK and generic health professionals and cleft researchers to ensure that people receive the best possible care.

Max Appeal

Max Appeal was founded by parents of children diagnosed with 22q11/DiGeorge Syndrome/VCFS. We are a small national charity, run almost exclusively by a group of dedicated volunteers backed up with a knowledgeable panel of medical professionals. Max, who was the inspiration for our beginning had a short life but Max Appeal is a charity with a vibrant life of its own”

Max Appeal.... is all about sharing, about hope and about standing with our families.

Our mission is to try to ensure that every person with 22q11.2 deletion lives an independent and prosperous a life as possible. That's not mission impossible!

Stickler UK

Stickler Syndrome UK (SSUK) is a non-profit organisation that provides information for families and healthcare professionals affected by, or caring for, people with Stickler Syndrome.

Stickler syndrome is a common but little recognised genetic disorder. One in 10,000 persons may be affected, although many medical professionals believe that the figure is considerably higher. Symptoms are variable and can present in different ways even with the same family.

SSUK is involved with:

Providing support for individuals and families affected by Stickler Syndrome
Raising awareness of Stickler Syndrome
Emphasising importance of early diagnosis
Producing clear and accurate information about Stickler Syndrome

Changing Faces

A UK charitable organisation for people with a scar, mark or condition on their face or body.

Our vision at Changing Faces is a future where everyone with a visible difference or disfigurement has the confidence, support and opportunity to lead the lives they want.

We provide unique and life-changing wellbeing, counselling support, skin camouflage and education services. We also campaign to challenge attitudes, prejudice and discrimination so that people with visible differences can lead the lives they choose.

Face equality international

Face Equality International is an alliance of Non-Governmental Organisations (NGOs), charities and support groups which are working at national, regional or international levels to promote the campaign for ‘face equality’

FEI was formed in 2018 by our late founder, Dr James Partridge OBE. The Alliance was formed to mobilise the many groups and organisations, big and small, national and international, which support and represent people with facial differences and disfigurements and thereby to create the critical mass and solidarity needed to gain global attention for the campaign for face equality

Headlines

A UK charitable organisation to support people with craniosynostosis and other rare craniofacial conditions.

Headlines was set up by a group of parents of children with craniosynostosis in 1993, becoming a registered charity in 1996. Our current trustees continue to be mainly those with lived experience of craniosynostosis, either as a parent or as an adult.

Our objectives are to:

provide support for people throughout their life to overcome the physical, psychological and social impacts of living with craniosynostosis and rare craniofacial conditions
facilitate research that seeks to advance understanding, ensures the provision of quality care, and identifies the best treatments for craniosynostosis and rare craniofacial conditions
raise awareness and educate people to improve public understanding of craniosynostosis and rare craniofacial conditions.

Speech at Home

Speech@Home is an evidence based online speech therapy resource for parents to support the provision of therapy for children with speech disorders related to cleft palate or similar sounding speech difficulties.

Speech@Home offers two different programmes for parents depending on the age and needs of the child - an in-depth course or an introductory course. Using the Speech@Home Therapy Programme Builder, Speech and Language Therapists can provide parents with a child specific therapy programme and the resources required.