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”

Jeunes Syndrome Foundation

Non-profit organisation
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Jeunes Syndrome Foundation is the only charitable organisation in the UK that supports people and their families who experience Jeunes Syndrome. Jeunes syndrome is a rare genetic disorder that is thought to affect 1:150,000 births in the UK

Jeunes Syndrome Foundation

2 weeks 6 days ago

Hi, sorry I’ve been a bit quiet. But I have been keeping an eye on the page. Hope those children that have returned to school over the last few weeks and this week have settled back in ok. Have you…

Jeunes Syndrome Foundation

2 months 3 weeks ago

Happy 7th Birthday to Jeunes Syndrome Foundation. Founder the late Valerie Kiln-Barfoot

Jeunes Syndrome Foundation

3 months 2 weeks ago

Hi, how are you all doing? Hope you and your families are keeping well. Welcome to any new members. Please remember we are all here to help with any questions or worries you may have. If we can. Once things…

Jeunes Syndrome Foundation

5 months 5 days ago

Hi everyone, hope you are all well and staying safe. Have been thinking of you all especially during this time. Linda

Jeunes Syndrome Foundation

6 months 3 days ago

Happy Mother’s Day to all you Mums. Hope you and your family are keep well and staying safe. Linda