The Jeune Syndrome Foundation has been set up by a Jeunes family for Jeunes families.
On this site you will find current information on what Jeune Syndrome is, why it occurs and common symptoms. You will also find a page of biographies written by people who have experienced or live with Jeune Syndrome.
Did you know the Jeune Syndrome Foundation has leaflets telling you all you need to know about Jeune’s? The Jeune Syndrome Foundation Facebook Page is a great place to come and chat and we would welcome any suggestions you might have to make this support group effective in supporting you and your family through your Jeunes journey. You can talk to other people living with Jeunes from all over the world who will be only too happy to share their experience and advice with you. If you have any ideas or suggestions on how to improve the group or website. Please get in touch with the details below.