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The information contained in the Organizational Database (ODB) is provided for informational purposes only. There is no implied endorsement by NORD. NORD does not promote or endorse participation in any specific organization. The information is subject to change without notice. Every effort is made to ensure that the details for each entry are as current as possible.


Danish Apert Syndrome Association (Danmarks Apertforening)


Address

Dronningeengen 17
Vedbaek, DK-2950 Denmark

Phone

4545890300

Fax

4545890350

Email Address

soeren@lildal.com

Description

The Danish Apert Syndrome Association (Danmarks Apertforening) is a national, voluntary, non-profit organization dedicated to providing information and support to individuals and family members affected by Apert syndrome. Also known as acrocephalosyndactyly type I, Apert syndrome is a rare genetic disorder characterized by premature closure of the fibrous joints between certain bones of the skull (craniosynostosis), causing the head to appear abnormally long and narrow (acrocephaly). Additional abnormalities may typically include a prominent forehead; protruding, widely spaced eyes; and/or webbing or fusion of the fingers and/or toes (syndactyly). Established in 1991, the association is committed to establishing and supporting contacts between individuals and families affected by Apert syndrome; increasing awareness of the disorder; ensuring appropriate, effective treatments; and advocating on behalf of affected individuals with healthcare institutions and professionals. The association also establishes and maintains contacts with other international, not-for-profit organizations and offers family networking services. The association's materials include a regular Danish language newsletter.

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