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.

Hi everyone! I hope 2017 is treating you all well. Here at JSF HQ we are gearing up for Rare Disease Day. With rare conditions like Jeune's we are better together

So let us know what you'll be doing to raise awareness on the 28th of Feb!
... See MoreSee Less

View on Facebook

I would like to wish all of our Jeune supporters and families a merry Xmas and a happy new year.

You have all been amazing this year. With your support we have managed to send education packs to all Genetic services in the U.K., run the first family conference and have gained 20 new families world wide that we support.

Your donations and hard work really do make a difference and I know you will continue to support us in any way you can

Love to you all x
... See MoreSee Less

View on Facebook

Hey everyone! Did you know that today is international GIVING TUESDAY. A day to give back to charity. So why don't you give back to The Jeune Syndrome Foundation by either donating through the donate button on our website or pledging to organise a fundraising event?

We have made great progress this year with our info packs and bringing families together through our family conference. And judging by the smile on these cuties faces I'd say it was a success

So please give what you can and thank you
... See MoreSee Less

View on Facebook