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.

It has taken me a couple days to figure out how to word this as its not meant to sound cheeky but my question is to the other adult jeune peeps

If any of you have ever put on weight did you find it affected your breathing more ?

I hope noone takes offence im just struggling a bit just now and i think its all weight related

Cheers
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So as you're all aware I have been unwell with the nasty Jeune Syndrome and therefore may have been slower to get back to you all. Thank you for being so patient over the last few months. The Foundation is run by a small team of unpaid volunteers who work tirelessly to support you and your family.

However we would love to recruit some more volunteers to help out with specific tasks like the quarterly newsletter, monitoring social media responses, fundraising, being a Jeune Syndrome family contact, helping with placing financial bids and sooooo much more.

If you have a few hours a month to spare I would love to put you to good use!

So get in touch and make this year the year you 'make Jeunes known'
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As I am sure most of you are aware the U.K. are not doing so well today after the terrible suicide bombing in Manchester. The Foundation sends our heartfelt condolences to everyone involved ... See MoreSee Less

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