Listed are support groups and other web resources you may find of use in your quest for information on cleft lip and palate.
A point to remember: cleft treatment can differ around the world and consequently the treatments discussed and the experiences of others will not necessarily mirror your own experiences. Nevertheless, shared experiences can lend comfort and support and add to your knowledge of cleft lip and/or palate.
Links to third party sites are provided for your convenience. CLAPAI is not responsible for the content of any linked sites. The listing of these sites is not intended as a substitute for professional medical opinion.
Support Groups –
Belgian Association for Congenital Facial Defects, VAGA vzw
Provides support for parents, youngsters and adults born with cleft lip and palate and other craniofacial defects. [extract from Eurocran] [English language introductory page]
Association of the Patients wjth Facial Anomalies and their Parents (ALA)
ALA is the only association in Bulgaria for parents and children born with facial anomalies, which was founded in 1997 in Plovdiv. Its main goal is the improvement of care and social integration of the patients with facial anomalies. [extract from Eurocran] [English language content available]
Landsforeningen Laebe-Ganespalte (LLG)
The purpose of LLG is to promote knowledge about cleft lip and palate (CLP), about the treatment possibilities and to act in the best interests of the patients. Members of LLG are adults with CLP, parents to children with CLP and others with interest in the subject. [extract from Eurocran] [No English language content]
Finnish national support group. Its main tasks are to give support to new families and those born with CLP, and to champion the rights of cleft patients. [No English language content]
Selbsthilfevereingung fÃƒÂ¼r Lippen-Gaumen-Fehlbildungen e.V. -Wolfgang Rosenthal Gesellschaft
To provide support for those with, and affected by cleft lip and palate (CLP). To promote knowledge about CLP and treatment possibilities. Provide help to patients hoping to get in touch with other families. [extract from Eurocran] [No English language content]
Cleft Lip and Palate Association
CLAPA offers support to parents of babies born with clefts by providing verbal and written information, a mail-order service for specialised bottles and teats, and a parent-to-parent support network represented by over 40 local branches across the UK. Has an extensive and very informative website. [extract from Eurocran]
Cleft and Craniofacial Unit, Chelsea & Westminster Hospital
Another one of the top cleft treatment centres in the UK, performing over 110 procedures and seeing 30 new primary patients per annum. It has a small yet informative web site useful for getting an overview of cleft treatment in a UK centre. Of academic interest might be its Business Case for the provision of cleft lip and palate services in line with the recommendations of the Clinical Standards Advisory Group (CSAG) Committee which is guiding the reform of cleft treatment in the UK.
Changing Faces’ primary focus is on disfigurements affecting the face. Changing Faces UK provides confidential support and information for anyone who has a visible disfigurement, their families or friends. The focus is predominantly on managing the emotional and social consequences of living with a distinctive appearance.
Patient / Parent Support Group for Craniofacial Anomalies in the Netherlands. [No English language content]
[No English language content]
LKG-fÃƒÂ¶reningen in Stockholm
A Swedish organisation for people born with Cleft Lip and Palate as well as parents to young children. [English language introductory page]
Probably the most widely known and visited cleft site on the web, and the sheer volume and diversity of information contained goes to prove why. There is information on every aspect of cleft, including feeding, parental emotions, surgery, dentistry, products and it even offers online support. There is opportunity to subscribe to its quarterly magazine as well as let your children visit its special area for kids. Personal experiences are also included.
Navigation can be a challenge as structure is not its strong point and the volume of information could do with more intuitive arrangement. Nevertheless a worthwhile site. Some use of frames.
This website is the work of a group of families who take care of children with clefts in the first few days of life. Well laid out and easy to navigate, it includes an overview of cleft management in the first 18 years of life, issues relating to hearing, speech and language development, and the role of the genetics counsellor. Personal experiences are also included, and there is a discussion area where people can participate in online discussions. A search facility is usefully provided.
American Cleft Palate-Craniofacial Association
The ACPA is an international association of over 2,500 health care professionals in over 40 countries involved in treatment and/or research on birth defects of the head and face, including cleft lip and cleft palate. Though its focus is the health care professional, its bimonthly (and available online) Cleft Palate-Craniofacial Journal reporting on clinical and research activities in cleft lip/palate, while somewhat academic, is readable and may be worth a visit. The journal is also available in PDF format, and searchable. Frames-based.
Cleft Palate Foundation
The website of the public service arm of the American Cleft Palate-Craniofacial Association (ACPA) adopts a question and answer approach for much of its content which is presented in the form of fact sheets. Also includes a glossary of terms, bibliography and links to other web sites. The honorary chairman of the Cleft Palate Foundation is actor Stacy Keach. Frames-based.
Prescription Parents, Inc.
This site includes articles by both medical professionals and Prescription Parent members. The organization is a member of the National Cleft Palate Association and claims to be one of the largest support groups in the United States. The articles are lengthy, covering such as caring for your new-born, hearing in children born with cleft palate, speech and language considerations, surgery, and a couple of articles by parents about personal experiences. The site is hosted by Richard Seltzer, an Internet consultant and writer.
Plastic Surgery Information Service
This website is sponsored by the American Society of Plastic Surgeons and the Plastic Surgery Educational Foundation. Covering far more than cleft issues, you must use either the search option or the drop-down menu on the home page to locate cleft related material. This includes a number of articles on surgical procedures and techniques. The associated diagrams are particularly illustrative. Press releases covering new research findings may also be accessible from time to time.
Born to be Cleft 🙂
This website belongs to 27-year old Kim (aka Calvero), who lives in Florida and who was born with a unilateral cleft lip and bilateral cleft palate. Kim shares her thoughts and experiences of being a cleft child, teenager and adult, and a visit to her site is well worth it. Kim (or Calvero) also founded the Cleft Club, an online discussion group for people born with a cleft and hosted by Yahoo, where you can exchange messages. The web space being provided by Tripod, a second window appearing with banner ads is the only irritation.
Tennessee Craniofacial Center
At this site you can access the full-text of the book Craniofacial Surgery including the chapter on ‘Clefts of the Lip and Palate’, which gives a useful and clear overview of the subject accompanied by photographs and diagrams. The chapter also covers the surgical techniques of this particular US treatment center.
Medical College of Georgia Craniofacial Center
There is only very brief information made available here for the parents of children seen by the unit; however, there are five useful sets of before-and-after photographs to indicate the success that can be expected following surgical repair. This photographic evidence is reason enough to pay a quick visit to this site.
World Craniofacial Foundation
The web site from the World Craniofacial Foundation, a nonprofit corporation, is well worth a visit both in terms of the detail given to the subject matter and the clarity of the presentation. The content is amply supported by images, some of which are animated and give an almost video-like effect mimicking change over time. Topics include Feeding, Postoperative care, Orthodontic treatment, Speech evaluation and treatment, Secondary treatment, plus anatomical presentations.
From the US National Library of Medicine, the section on cleft lip and palate includes a listing of US Government and other resources, plus information on clinical trials, research, treatment, specific aspects, and related topics. There is also access to recent research articles from the MEDLINE database.
CleftPALS (Cleft Palate and Lip Society) is an Australian national voluntary group claiming a membership of over 1000, and provides this website to help anyone, but particularly parents, seeking information about the cleft condition. It includes four personal stories and a photo gallery which makes use of thumbnail images leading to larger versions.
Cleft Lip & Palate Support Group
Website of the New Zealand Cleft Lip and Palate Support Group. Latest newsletter can be downloaded in pdf format. Has its own Discussion Forum.