The Goldenhar Family Support Group (UK) is a registered UK charity.
We are run solely by families and volunteers affected by this condition. We do not have any employees. Even our Committee provide their time and services voluntarily.
Our mission statement:
- We are here first and foremost to provide information and support services for families who have children with Goldenhar Syndrome.
- We are here to gather and present information that families and health professionals can use to better understand the problems and to disseminate that information to all interested parties.
- We provide annual family days at a considerably reduced cost to the families attending. (Subject to available funds).
The aims of the group are to:
- Put families in touch with other families who have children or family members with similar problems.
- Give parents and patients viewpoints about the syndrome through a regular newsletter.
- Provide a link to other organisations who might be able to help families.
- Pass on some general information from specialists in the medical profession.
- Offer practical support for common issues.
Please note that this web site is a general guide only and is in no way able to provide medical advice about specific problems.