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, just to let you know Valerie is back in hospital again. Hopefully just for a few days.
So if any of you have any questions I will try and answer them but if I can’t Valerie will answer them when she feels a bit better. But of coarse I know a lot of you have some knowledge of Jeunes Syndrome and can answer some of the questions.
Take care all and have a good day. Linda
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2 months ago

Hi I don't know if this page is still on going but I'm a desperate worried mom with a 7 year old girl who was diagnosed with Jeune Syndrome at the age of one. Her kidneys have failed shes currently on dylasis but she suffered cardiac arrest before they even touched her to put the line in she ended up in intensive care and they tried again 2 days later they was successful they took her of life support a week later. She now has dylasis 3 times a week four hours. Her daddy is her donor and there looking to transplant in August time but they want to take her kidneys out in next few weeks. My worry is she suffered a cardiac arrest the first time! Is there any body with successful stories of there children survived a transplant I don't want to lose her we came so close in doing so and that broke us 💜. ... See MoreSee Less

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The first chest infections of the year are hitting the Foundation hard. We forget how painful it is to cough using a Jeune Syndrome rib cage

What's your secret way of helping clear an infected chest?
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