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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.


Ehlers-Danlos Support Group UK


Address

PO Box 748
Borehamwood, WD6 9HU United Kingdom

Phone

2087365604

Description

The Ehlers-Danlos Support Group UK is an international non-profit self-help organization dedicated to informing, encouraging, and assisting those with Ehlers-Danlos Syndrome (EDS) and their family members. Ehlers-Danlos Syndrome (EDS) is a group of rare inherited connective tissue disorders characterized by abnormalities of the skin, ligaments, and internal organs. Although symptoms and physical features may vary greatly depending upon the specific form of EDS present, many affected individuals may have thin, fragile, hyperextensible skin that may bruise easily; abnormally loose joints that are prone to repeated dislocations; widespread tissue fragility with bleeding and poor healing of wounds; and/or other abnormalities. Established in 1992, the Ehlers-Danlos Support Group UK is committed to raising awareness of EDS among the medical and professional communities; supporting research into the causes, treatment, and cure of EDS; and enabling members of the organization to exchange information, support, and resources. The Group also maintains a listing of medical specialists who have experience with EDS; holds a biennial National Conference; produces booklets, information sheets, and other materials on all aspects of EDS; offers a "Key Facts Medical Card" that is available in several languages to help affected individuals alert medical professionals to key aspects concerning EDS; and has a regular newsletter entitled "Fragile Links."

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