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.

The Foundation Need You!!

We are looking for someone with experience in the production and post production of short 2-3minute youtube videos.

This will include hands on filming and use of green screen, possibly some filming on location and then subsequently the post production including animation and editing ready to be used on youtube.

We can offer a small fee for this service but because we are a charity this probably wont be at ‘normal’ sector prices. Reasonable expenses and equipment will be included.

What do you get out of it I hear you cry?! Well you get to go home at night with the warm, fuzzy glow that you’ve helped newly diagnosed families of Jeune Syndrome feel less alone, scared and isolated and maybe even a little bit more positive about the future.

I bet some of our families will tell you in the comments below how this would have helped them? So please if you can help in any way get in touch.

After all volunteering is proven to improve your quality of life by connecting you with others, improving your mental and physical health, advancing your career and bringing you that warm glow I was telling you about earlier!
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Here at the Foundation we’d like to celebrate International Women’s Day. We have several amazing women and mothers who both help run our charity and look after all us Jeune individuals. Why not let us know which Jeune women you’ll be celebrating and thinking about today? ... See MoreSee Less

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As part of Rare Disease Day 2019 and alongside other rare disease patient organisations, the Foundation signed an open letter to the UK government urging them to review and refresh the Rare Disease Strategy before the end of 2020. We at the Foundation believe that the UK Strategy for Rare Diseases although a landmark document at its time of conception is becoming lost in a sea of UK bureaucracy, with many of its original commitments no longer being relevant due to it being out of date.

Time, technologies, needs and wants of the rare disease community have moved on significantly since publication and we urge the UK government to immediately update this framework to make it fit for purpose.

The Foundation hopes it has presented you in the best possible way and will continue to do so in the future
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