Resources Online
Posted on March 16th, 2007
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 - Europe
[More information on European support groups available from Eurocran]
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]
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]
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