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.

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

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Out of curiosity...... Does anyone else have a issue with your babies, kids or yourselves with Jeune around loud noises, alot of people or anything that would be considered sensory overload?? Zachary does and freaks out and cries, causing him to of course work harder with his lungs therefore causing him to have issues with breathing. I was just curious if it was a trait of Jeune or something else that I need to look into. We already keep Zachary away from alot of people, don't let anyone in the house or near Zachary of they are sick to protect him and crowds to keep him from catching something as requested by his pulmonagist. But there are times when we can't help things that happen. Thanks! ... See MoreSee Less

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