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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.

Floating Harbor Syndrome Support Group

a/k/a: FHSSG-NA

Address

P.O. Box 124
Rosebud, TX 76570
USA

800 Number

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TDD

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Email Address

littleflock7@gmail.com

Website

http://www.floatingharborsyndromesupport.com

The Floating Harbor Syndrome Support Group is a voluntary organization that provides information and encouragement to parents of children affected by Floating Harbor syndrome. This syndrome is a rare genetic disorder that was named for the first two identified patients who were seen at Boston Floating Hospital and Harbor General Hospital in California. Its main characteristics include short stature, delayed bone growth, delay in expressive language, and distinctive facial features, such as a broad nose, wide mouth, thin lips, and deep-set eyes. The support group serves all populations and coordinates patient networking and patient education. It also provides publications that include a newsletter, brochures, pictures of children with FHS, and a membership directory.

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