Medical Info

Please take a look at these websites for more cleft-related resources and information

Online Resources

  • Fetal Anomaly Screening Programme

    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.

  • CLEFT SiS

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

  • Cleft Lip and Palate Breastfeeding

    Alice Farrow lives in Italy and has a daughter born with cleft lip and palate. Alice explains: "Six years ago I was expecting my second daughter. I went for a routine ultrasound and discovered that Miriam had a cleft lip and palate. I barely knew what that meant, but somewhere deep inside I felt that carefree breastfeeding experience – which I hadn’t had with my firstborn and hoped to have this time around – come crashing down. I left that appointment in a fog, not knowing what to do next. This website is for those of you who know exactly what I’m talking about. If you’ve just arrived because your world has just crashed down around you, then welcome! Don’t worry, you’ll build your world back up again. Your breastfeeding experience will be unique – perhaps not as you imagined. It might involve, pumps and bottles, and things you would rather live without. But your child will be so, so grateful that you’ve just Googled breastfeeding."

  • 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.

  • Hypodontia

    An information resource on the oral condition known as hypodontia (also known as anodontia or oligodontia). Patients with this condition have missing adult or baby teeth resulting in crookedness, spaces between teeth and small or malformed teeth. There is also useful information for dentists on current research for treatment.

  • European Cleft Organisation

    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.

  • 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.

  • 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.

  • 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 U.K."

  • 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.

  • 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.

  • Quit Day

    Quit Day supports people looking to give up smoking and educates parents and carers on the dangers posed to their children by second hand smoke.

  • Changing Faces

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

  • Cleft Lip and Palate Association of Ireland

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

  • Cleft Palate Foundation

    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.

  • Wolfgang Rosenthal Gesellschaft

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

  • I CAN

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

  • 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.

  • 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.

  • American Cleft Palate-Craniofacial Association (AC

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

  • Max Appeal

    UK support group for families affected by DiGeorge Syndrome.

  • 22q11 Group

    Group formed by parents of children with Velo Cardio Facial Syndrome/Sprintzen Syndrome/Di George Syndrome

  • Stickler Support Group

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

  • UK Self Help Groups

    Index of self help groups in the UK

  • Active Birth Centre

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

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