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.

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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Today at the Foundation we're celebrating Undiagnosed Children's Day 2017

Over 50% of children that go for genetic testing will not get a diagnosis for their condition and we know that lots of you have been here and that some of these children may actually have Jeune Syndrome

So let's show our support for families who don't have a name for their diagnosis, you are not alone
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Hello my daughter is 6 years of age and she has jeune syndrome. She has multiple problems but we've been told she now had stage 4 kidney disease I'm so frightened for her you can't tell anything is wrong with her apart her chest shape and size but she's like a normal girl she dances plays runs (but she does get tired and a lot more recently) has any other child going through or been through what ebony is at the minute and could share some stories 🖤

Thank you

Most recent letter today
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