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Goldenhar Syndrome Support Network Society
Copyright 1998
All Rights reserved.
Email:
Webmaster
Site Last updated:
January 22, 2006

 

About Us

Our group consists of over 470 people* somehow touched by a series of birth defects, sometimes called Goldenhar Syndrome.

Goldenhar Syndrome is a congenital condition that presents itself in many different birth defects. Not all are present in each case and there are many varying degrees of severity.

Some related conditions include:

    • Oculo Auriculo Vertebral Spectrum (OAV Spectrum),
    • Hemi-Facial Microsomia (HFM),
    • Oculo-Auriculo-Vertebral Dysplasia,
    • Facio-Auriculo-Vertebral Spectrum (FAV),
    • Goldenhar-Gorlin Syndrome and
    • First and Second Bronchial Arch Syndrome.

But that alone tells you nothing.

Goldenhar Syndrome can affect almost any area of the body, but is mostly centered on the facial and skeletal areas. In its mildest case a child's face may only be slightly asymmetrical and their ears malformed. In the most severe of cases a child may have to be tube fed, on a respirator and have some brain damage.

We live with Goldenhar Syndrome and it's related conditions everyday, never meeting anyone in person with the same thing. This syndrome occurs in 1 in 3500 - 5000 children and yet it is virtually unheard of. Please help us tell the world about this syndrome and help us to get our message out to those affected people who haven't heard about us already. Thank you, if for nothing more than taking the time to read this.

If you would like to find out more about Goldenhar Syndrome, after reading through all the various information contained in this website, you can contact our founder Barb Miles or our Group Moderator Sandi at:

Goldenhar Syndrome Support Network
Email: support@goldenharsyndrome.org
Snail Mail:
9325 163 Street
Edmonton, Alberta
T5R 2P4 Canada

 

Sincerely,

The Goldenhar Syndrome Support Network

Note:
* 470 members as of September 1, 2005