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.

Hi Jeune Family! Yes it's that time of year again when we get to apply for a new grant from Jeans 4 Genes. Last time we used their generous donation to run the first Jeune family conference in the world. So this year we'd love your say on what you'd like a grant to pay for.

Vote for your favourite option over the next week and we'll reveal what you guys have decided to apply for

Vote for your favourite option in the comment box

1. Family conference for 10 families (last year was 5)

2. Newly diagnosed boxes - money to send out informaton and support boxes to newly diagnosed families

3. A DVD for children with Jeune Syndrome to explain Jeune Syndrome in a way they'll understand

4. Money to pay for a Jeune support officer to visit families who need support at home

Get voting!!
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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

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