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.
Belgium
Belgian
Association for Congenital Facial Defects, VAGA vzw
http://www.vaga.be/
Provides support for
parents, youngsters and adults born with cleft lip and palate and other
craniofacial defects. [extract from Eurocran] [English language introductory
page]
Bulgaria
Association
of the Patients wjth Facial Anomalies and their Parents (ALA)
http://www.ala-bg.org/
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]
Denmark
Landsforeningen Laebe-Ganespalte
(LLG)
http://www.llg.dk/
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]
Finland
Suhupo
ry
http://www.halkio.fi/
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]
Germany
Selbsthilfevereingung für
Lippen-Gaumen-Fehlbildungen e.V. -Wolfgang Rosenthal
Gesellschaft
http://www.lkg-selbsthilfe.de/
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]
Great Britain
Cleft
Lip and Palate Association
www.clapa.com
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
www.cleft-craniofacial.org
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
http://www.changingfaces.org.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.
Netherlands
Laposa
www.laposa.nl/
Patient / Parent Support Group
for Craniofacial Anomalies in the Netherlands. [No English language content]
Norway
Leppe/ganespalteforeningen
(LGS)
http://www.lgs.no/
[No English
language content]
Sweden
LKG-föreningen in
Stockholm
http://www.lkg-stockholm.org.se/
A Swedish
organisation for people born with Cleft Lip and Palate as well as parents to
young children. [English language introductory page]
Wide Smiles
www.widesmiles.org/
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.
Smiles
www.cleft.org/
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
http://www.acpa-cpf.org/
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
www.cleftline.org/
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.
www.samizdat.com/pp1.html
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
www.plasticsurgery.org/
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
http://members.tripod.com/~Calvero/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
www.craniofacialcenter.coml
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
www.mcg.edu/centers/cranio/cleft.htm
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
www.worldcf.org
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.
MEDLINEplus
http://www.nlm.nih.gov/medlineplus/cleftlipandpalate.html
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.
Australia
CleftPALS
www.powerup.com.au/~cleftpal/
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.
New Zealand
Cleft Lip
& Palate Support Group
www.cleft.org.nz/
Website of the New Zealand
Cleft Lip and Palate Support Group. Latest newsletter can be downloaded in
pdf format. Has its own Discussion Forum.