Supporting people to find their own solutions to improve well-being

Bardet-Biedl Australia

Current Size: 100%

Address: 
QLD
Australia
Contact Hours: 
Email anytime. Contact is returned as soon as possible.

Group Description

Bardet-Biedl Australia is a website to help people establish contact with others affected by the syndrome. It is not a support group. There are also great links to the official international support groups and latest research on the syndrome.

Area Serviced

Australia wide

Services

Services/Activities: 
  • Email and Online Support.
Specific issue 
  • Bardet-Biedl Syndrome. Also support those that may have been diagnosed as Laurence-Moon-Bardet-Biedl Syndrome or Laurence-Moon-Syndrome. Years previously the condition was known as Laurence-Moon-Bardet-Biedl Syndrome however this was split into 2 conditions based on differing symptoms. In Australia most people for the last 30 years have been diagnosed as either Bardet-Biedl or Laurence-Moon. We face many of the same issues and welcome both syndromes.
Who can join 

People diagnosed with Bardet-Biedl can contact and family, carers, interested parties are welcome to access & contact on the website for more information.

Membership Fee 

Nil

Additional information 
Bardet-Biedl Australia is not a support group. It is someone with the syndrome trying to help people connect with others and raise the profile of the syndrome in Australia. This primarily occurs through Facebook.