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.

3 days ago

Jeunes Syndrome Foundation

Don’t forget Jeans for Genes day tomorrow! Once again donations from this year will go to find our ‘newly diagnosed’ dvd which will give vital hope and current information to newly diagnosed Jeune families!

And don’t forget to post us all your denim themed pics!!
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2 weeks ago

hey I'm just wondering if someone can help me. my daughter is 7 years of age she has had her kidneys removed and her blood pressure still remains high. there saying she's drinking 1lr of fluid which we count and she doesn't. she eats more than she drinks at the minute. can something else cause the blood pressure? or the extra fluid as the dylasis team are calling us liars and hinting we are bad parents. there saying her dry weight is 17.2. surely it can't be.
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Hi to all our Jeunes Syndrome Family.
I’m afraid Valerie the founder of this group and my daughter is very poorly in Hospital again.
Hopefully she will be better soon but in the mean time I will
try to answer any questions. And I’m sure as always as a family of this group you will all try and help each other with any answers too.
Best wishes to you all
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