Jeunes Syndrome Foundation

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Jeunes Syndrome Foundation 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 is an autosomal recessive condition that is thought to affect 1:150,000 births in the UK each year. It is caused by defective cilia (hair like protrustions that protrude from the cell body) which underlies many genetic conditions collectively called "ciliopathies"

Hi Everybody, IDEAS FOR THE WEBSITE??My name is Aaron and I built the website for the Jeunes Syndrome Foundation back in...
05/08/2026

Hi Everybody,
IDEAS FOR THE WEBSITE??

My name is Aaron and I built the website for the Jeunes Syndrome Foundation back in 2013 with the founder Valerie. Unfortunately, we sadly lost Val in 2019, but I said that I would always maintain the website for her to support the wonderful work she did in raising awareness of Jeune's.
https://www.jeunes.org.uk/
You may not be aware that there is a website, but I feel it needs some love, attention and a bit of modernisation.
I'm happy to do it, but I'm calling on this wonderful community to help me!

The original idea of the website was to put a source of information together and to promote the page so people had a group to connect to.

Do you have any ideas for what could go on the website?
Would anyone like to share their story?
Is there are more recent breakthroughs in Jeune's?
Is there some information which you think would be useful on the website.

Post in the comments, or message us.

Thanks in advance.

Aaron

The Jeune Syndrome Foundation has been set up by a Jeunes family for Jeunes families. On this site you will find current information about Jeune Syndrome.

Thinking of you all today and Valerie my late daughter who founded this group.Linda xx
28/02/2026

Thinking of you all today and Valerie my late daughter who founded this group.
Linda xx

Happy Christmas everyone. Have a lovely day. Xx🎄🎄🎄
25/12/2025

Happy Christmas everyone.
Have a lovely day. Xx🎄🎄🎄

I’d like to wish you all a Very Happy Christmas and a Happy New Year.
25/12/2024

I’d like to wish you all a Very Happy Christmas and a Happy New Year.

15/01/2024

Has anybody that is on the private page have had any issues with it over the last few days?
Going against the group and Facebook rules.
Facebook is saying they are going to remove the page unless I can give them a good answer to keep it on. Linda

01/01/2023

Happy New Year to you all.
Hope all your dreams come true.

Merry Christmas to all. Have a lovely time. Love and Best Wishes From Linda ( JSF )
25/12/2022

Merry Christmas to all.
Have a lovely time.
Love and Best Wishes
From Linda ( JSF )

16/08/2022

Welcome to all our new members.

Family members are welcome. They just need to answer the 2 questions that are asked when asking to join.

Linda

Address

Littlehampton
BN176FD

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