Dear Friends,We are a group of parents whose children are affected by Goldenhar Syndrome.
Our first virtual meeting took place about a year ago thanks to http://fmfpc.altervista.org/portale.htm.htm site, which is entirely created and managed by an Italian person affected by a rare disease. Thanks to this site, we got in touch for the first time, and had possibility of exchanging experiences, advice and useful addresses.
As time went by, we felt the increasing need of meeting us and of creating something real and visible which could be useful for all those parents in need of help, such as we are. The we decided to meet on 18th October 2003 at the “B.I.R.D.”, the Italian centre of research on rare diseases, in Vicenza, on whose site are still visible our “first steps” as Italian Goldenhar Syndrome Group. The meeting allowed us to identify a number of common aims in collaboration with the “B.I.R.D. Foundation”: the creation of an information network including the high specialisation centres in Italy and abroad, qualified to solve those problems connected to the Syndrome, and the beginning of a research project in collaboration with laboratories and foreign associations.
The urgent need of the Group to have a private space led tot he creation of an Internet site entirely devoted to our problems and experiences.
www.goldenhar.it gives us the possibility of being directly, immediately visible: anyone can consult, read and - why not - write their own experiences. A “free space” page is particularly devoted to those who want to describe their personal story.
We hope that our personal experiences could be mutually useful.
See you soon, on the “free space” area.

JANUARY 2004

All medical information present on www.goldenhar.it site is edited by a group of parents whose children are affected by G.S. E-mail:mail@goldenhar.it. Any decisions taken by users of these Internet pages, on the basis of any data and information given here, are taken completely autonomously and at their own risk. All information reported here is exclusively a suggestion, and cannot substitute any medical consultation. Privacy. Personal data given at Goldenhar Syndrome Italian Group, by patients and their parents, will not be communicated to other patients without any explicit authorisation.