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

1 month 3 weeks ago

Happy New Year to all our Jeunes Family and Friends and Family that support us.

Jeunes Syndrome Foundation

2 months 2 weeks ago

Thank you all for your lovely messages you put on my post yesterday. You are all true friends. I might not know as much as Valerie did but I’m always here for you all. Take care and stay safe. Xx🌟

Jeunes Syndrome Foundation

2 months 2 weeks ago

Have permission to share by Rachael Johnson. QNMU member and RN Rachael Johnson has a rare form of dwarfism and was diagnosed with renal failure at a young age. She shares her inspiring story with us on International Day of

Jeunes Syndrome Foundation is with Valerie Kiln-Barfoot.

4 months 1 week ago

1st Conference ( 2016) the late Chair person Valerie Kiln-Barfoot did. A great day. Even I learnt more about the condition. Hopefully in the future we can do another one. Valerie use to say she hadn’t achieved much in her

Jeunes Syndrome Foundation

5 months 3 weeks 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