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.

Hello from here at Foundation HQ- this weekend supporters of the charity Royston Hall and Oliver Merchant got married and kindly asked for donations to the Jeune Syndrome Foundation rather than wedding presents

So far we’ve raised £750! And we’d like to say a big thank you to all the donors and congratulations to the happy couple. Remember if you’d like to donate you can always do this through our website www.jeunes.org.uk every little helps us ‘make Jeune’s known’
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Written by Valerie Kiln-Barfoot
Dear Jeune syndrome

I don’t know whether you realise but yesterday I turned 30. That’s right 30 years I have been living alongside you and trying to stay afloat from all the crap you throw at me and my loved ones. And it turns out that I’m blessed with having a lot of loved ones. I had a surprise party and more cards and well wishes then I could ever dream of.

Yes today I’m exhausted and they’ll be times I still hate you with a passion but mostly right now I’m still beating you and I’ll continue to try and beat you not for me but for all the Jeune people to come.

Jeune you’re a hard friend to have but I’m even harder, so get your game face on cause I’m not done with you yet

Happy 30th old friend - see you next year
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