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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.


Cystic Hygroma and Lymphangioma Support Group


Phone

2086729259

Description

Cystic Hygroma and Lymphangioma Support Group is a voluntary, online organization whose primary mission is to network families afflicted with a lymphatic malformation by giving children, parents and adults the opportunity to speak with or meet someone else also affected by this condition. In order to achieve this goal, the activities of Cystic Hygroma and Lymphangioma Support Group include compiling a confidential database of children and adults with a lymphatic malformation so they can put them in touch with others with a similar condition in their area; holding a large gathering once a year with key speakers and medical updates while offering a chance for parents and kids to meet up; medical information which includes what treatment options exist and up to date medical and research advances; answering phone calls to offer support and guidance to anyone who needs it. Lymphatic malformations are rare non-malignant masses consisting of fluid-filled channels or spaces thought to be caused by the abnormal development of the lymphatic system. These malformations are usually apparent at birth or by two years of age. Lymphatic malformations can affect any area of the body (except the brain), but most commonly affect the head and neck.

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