Jeune Syndrome Foundation

“Make Jeune’s Known”

About the Jeune Syndrome Foundation

About the Foundation

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?

You can download a copy HERE.

Our Community

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.

“Lets Make Jeunes Known”

From our Facebook page.

Have you applied for your family conference tickets yet?

Conference tickets have been selling like hot cakes this year and I wouldn't want you to miss out! Not only will you get to meet doctors at the forefront of Jeune Syndrome medicine and research but you'll get to have lots of fun and laughs with other Jeunes families

Remember it won't cost you a penny and you'll also get £100 towards your travel expenses

To find out more just follow this link
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As I prepare for another procedure today I was thinking about the multitude of scars that pepper my body from all of the procedures and operations I've had over the years, courtesy of Mr Jeunes.

How do you cope with cosmetic and bodily changes because of your Jeune Syndrome? If you could would you get rid of them or do you recognise them as a reminder that that procedure kept you alive? Any advice for the mums out there on how to deal with their children and scars?
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