Other Resources

Please Note: CLAPA does not endorse or take responsibility for the content of external sites. We believe these resources may be useful to people affected by cleft, but cannot guarantee the information on them is accurate or relevant to your sitaution. Information you read online should never replace specialist medical advice from a health professional who knows what is appropriate and safe for you and/or your child.

To suggest another resource for people affected by cleft, email info@clapa.com.

Jump To:

Blogs & Cleft Support Sites – Blogs from parents and adults, and other sites providing support to people affected by cleft in the UK.

Charities & Support Groups for Associated Conditions – There are many syndromes and other conditions associated with cleft lip and palate, some of which are very rare. There are also associated issues which are not unique to cleft, such as hearing and speech difficulties. This is a list of support groups and other charities catering to these specific syndromes, conditions and issues.

Cleft Healthcare and Research Networks – Large-scale research projects and other NHS resources around cleft lip and palate.

International Cleft Charities and Organisations – CLAPA only works within the United Kingdom. Here, you can find support groups, charities and other organisations working to support people born with a cleft around the world.

Parenting and Childcare Resources – Sites with information for parents and carers about everything from breastfeeding to language development.

Blogs & Cleft Support Sites

Cleft Lip and Palate Breastfeeding

Alice Farrow lives in Italy and has a daughter born with cleft lip and palate. This site documents her experiences and tips for other parents hoping to breastfeed a child with a cleft.

Healthtalk.org

Healthtalk.org is a resource covering many different health conditions, now including cleft lip and palate. “This section is based on the experiences of 24 families or couples who have a child born with a cleft lip and/or palate and 15 adults who were born with the condition. Our interviewees told us their experiences of diagnosis, birth, treatment, public awareness and social interaction with respect to cleft lip and palate and they also gave advice for other people affected by cleft and made suggestions for possible changes within the cleft service in the UK.”

Pyjama Fairies

Pyjama Fairies make wrap pyjamas and surgical gowns specially designed for children who are having surgery or any associated test. They are designed in such a way that your child can remain fully dressed when the medical team need to examine their abdomen, complete observations and administer medication. This means your child can still feel safe and warm whilst they are in hospital. Plus they are totally free of charge!

Charities and Support Groups for Associated Conditions

22q11 Group

Group formed by parents of children with Velo Cardio Facial Syndrome/Sprintzen Syndrome/Di George Syndrome, also called 22q11 Deletion

Changing Faces

UK organisation offering information and support to children and adults who have facial disfigurements.

Little People UK

Cleft palate is a characteristic of some types of dwarfism.

Little People UK was co-founded in January 2012 by actor Warwick Davis, his wife Samantha and a group of individuals with the same goal; to offer friendship and support to people with dwarfism, their families and friends, and help build a positive future for those individuals.

Max Appeal

UK support group for families affected by DiGeorge Syndrome.

National Deaf Children’s Society (NDCS)

NDCS is an organisation of families, parents and carers, providing emotional and practical support through our Freephone Helpline, our network of trained support workers, our wide range of other support services and our publications and website. As the leading provider of impartial information and individual advocacy on every aspect of childhood deafness, NDCS can help with welfare rights and benefit claims, making education choices, advising on health and audiology and technology, or simply as someone to talk to. NDCS campaigns for improvements in services aimed at families with deaf children, working with central and local government, health authorities, education professionals, social services, manufacturers and voluntary organisations.

Stickler Support Group

UK organisation offering information and support to individuals and families affected by Stickler Syndrome

Talking Point

Talking Point is a website all about speech, language and communication difficulties in children. It has a range of information and resources for parents and carers of children and also for professionals.

Tots on Tour

Tots on Tour is a Lincolnshire-based organisation that works with families and professionals to enhance children’s early communication and language skills. For children and their families, the Growing Talk Family Programme is provided and for early years practitioners there is an extensive programme of training and workshops available.

Cleft Healthcare and Research Networks (UK)

CLEFT SiS

The National Managed Clinical Network for Cleft Lip & Palate in Scotland

Fetal Anomaly Screening Programme (FASP)

The NHS Fetal Anomaly Screening Programme aims to set standards and oversee the implementation of a good quality screening programme for all women in England.

International Cleft Charities and Organisations

American Cleft Palate-Craniofacial Association (ACPA-CPF)

US based international association of health care professionals involved in the treatment of and research into cleft lip, cleft palate and other craniofacial anomalies.

American Cleft Palate-Craniofacial Association

US organisation offering information to parents of babies born with clefts and other craniofacial anomalies and to health care professionals who are involved in the care of affected infants.

The Cleft Club

This is an interactive US club for people affected by cleft lip/palate. There are different forums where messages can be read and posted.

CLEFT

CLEFT is a charity which funds research into the causes and treatment of cleft lip and palate, as well as supporting the development of cleft teams in various developing countries.

Cleft Lip and Palate Association of Ireland

Irish organisation offering information and support to individuals and families affected by cleft lip/palate.

European Cleft Organisation (ECO)

The European Cleft Organisation was established in July 2007 and is based in the Hague, Holland. 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 membership of the board which comprises patient representatives and health professionals in equal measure. Central to the organisation’s philosophy is that patients and user groups must work in partnership with health professionals, throughout Europe, to enhance cleft care.

Wolfgang Rosenthal Gesellschaft

German self-help group for families affected by cleft lip and/or palate.

Parenting and Childcare Resources

Active Birth Centre

Information on many aspects of pregnancy and birth, breastfeeding and babycare.

Breastfeeding Support Groups (UK)

A list of breastfeeding support groups around the UK.

Hand in Hand Parenting

Hand in Hand Parenting’s mission is to support parents and provide them with the insights and skills they need to listen to and connect with their children in a way that allows each child to thrive.

I CAN

A childrens communication charity who work to develop speech, language and communication skills for all children.

NCT Shared Experiences Helpline

The NCT Shared Experiences Helpline supports anyone who has had a challenging pregnancy, birth or early parenthood by putting them in touch with a volunteer who has had a similar experience, and giving them the contact details of other support organisations.

Pyjama Fairies

Pyjama Fairies make wrap pyjamas and surgical gowns specially designed for children who are having surgery or any associated test. They are designed in such a way that your child can remain fully dressed when the medical team need to examine their abdomen, complete observations and administer medication. This means your child can still feel safe and warm whilst they are in hospital. Plus they are totally free of charge!

UK Self Help Groups

Index of self help groups in the UK

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