Our Association and this website have been created to provide information and support to all those who have been affected by Jeune Syndrome. This includes not only those diagnosed but also their families and friends.

Our mission is to raise the awareness and level of understanding of this rare condition throughout the wider community. In the long term, we aim to raise funds to:

• increase research into identifying the Jeune Syndrome gene and the underlying cause of the various symptoms such as renal failure; and
• research various treatments such as rib expansion in order to provide a better quality of life for our children.

Claudine Spinner
President

Last updated 11 March, 2007