There are many other parents out there who have created their own website regarding Jeune Syndrome. Here are two of them:

American
http://www.jeunesfamily.org/
This website contains a message board and other good ideas and is also a fundraiser for Americans who are undertaking titanium rib expansion surgeries.

Italian/English
http://web.tiscali.it/sindrome_di_jeune/
This website has a great database of kids from all around the world who have Jeune Syndrome. They range in ages and the information provided is quite comprehensive and includes in some cases both medical and personal information about the sufferer and how they are going. If you provide your child’s diagnosis and treatment details for the database, you can get access to other families’ (who are happy to share information and answer any questions) contact details.

There are several other sites which may be of interest when seeking further information:

Genetic Health Services Victoria
www.genetichealthvic.net.au

Columbus Hospital
(web address to be provided)
This is an American site which states that it is one of the leaders in Jeune research and treatments.

Royal Childrens Hospital Melbourne
www.rch.org.au

By listing the sites above, the Australian Jeune Syndrome Association Inc. hopes to help provide a starting point for collecting information and does not personally recommend or endorse any particular site or treatments. Instead it recommends that all those seeking medical advice regarding Jeune Syndrome always consult their treating medical practitioners.