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.

So I'm really happy to announce that the wonderful people at Jeans for Genes have given us a grant this year. Although not enough for another conference this year folks the money will go towards producing and promoting a DVD that will be made available to newly diagnosed families to help them understand and be given hope when starting their new journey with Jeunes.

We will later in the year be looking for families willing to take part on the DVD to show and talk about their experience with Jeunes. So if you fancy helping the next generation please get in touch. And as always if you have any ideas about what you'd like featured on the DVD why not leave us a comment?
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Hi all. As many of you know our founder Valerie Kiln-Barfoot has been extremely unwell recently with life threatening sepsis and therefore we apologise if the Foundation has been slow to keep up with you guys. We will however endeavour to start catching up and getting back to normal but would appreciate all your patience and forgiveness at this difficult time. The Jeune catches up with even the best of us! Keep supporting each other and love to you all xx ... See MoreSee Less

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We have a big announcement coming your way this Friday at 3pm uk time. Don't miss out!! ... See MoreSee Less

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