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 are currently looking for Jeune families to take part in the exciting 100,000 Genomes Project.

This would give you the opportunity to have your whole DNA sequenced and find out your specific Jeune diagnosis. It will also go along way in helping us understand how our condition occurs

Families would need to not have been genetically screened before and hold an English NHS number

Genetic testing for Jeune Syndrome is not routinely provided on the NHS, so this is an exciting opportunity to have yours done

For more info just get in touch!
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Here at the Foundation we'd just like to wish one of our trustees Karen Garner a happy birthday! Have a good one! ... See MoreSee Less

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Here at the Jeune Syndrome Foundation we'd like to wish Niamh (Mary Rochford Keogh) a wonderful 2nd birthday!

I hope that this happy, smiley, giggly young girl provides inspiration for all you other Jeune families going through a difficult time
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