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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.

Kniest SED Group

a/k/a: KSG

Address


Email Address

support@ksginfo.org

Website

http://www.ksginfo.org

The Kniest SED Group (KSG) provides educational, and social support to people with Kniest syndrome, spondyloepiphyseal dysplasia (SED), and spondylometaphyseal dysplasia (SMD) and their families. Kniest syndrome is a type of skeletal dysplasia that is characterized by short torso, round face with hollow or depressed areas, swelling and stiffness of the joints, and a stiff drawing up (contractures) of the fingers. SED is a rare genetic disorder characterized by growth deficiency before birth, spinal malformations, and/or abnormalities affecting the eyes. SMD is a rare condition characterized by a short torso and changes in metaphyseal layer of long bones. KSG offers services via its web site including patient networking, patient and professional education, and support groups. KSG offers lists of scholarships, adaptive equipment resources, anti-bullying links, advocacy information, research, stories by and about people with dwarfism, and help for parents of newly diagnosed children.

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