Our Syndrome. Your Information.

Our best hope for finding new treatments and raising awareness is your participation in JS-LIFE, the JSRDF patient-centered registry.

Whether you are affected, a caregiver, or related to someone who is or was affected, your information* could be the key. Please take a few moments to answer a few questions today.
*only one survey is necessary per affected individual


Joubert Syndrome UK



August 2011 - Family Fun Day | Print |

On the 13th August 2011 JSUK held it's first Family Fun Day!

ffd4 ffd2 ffd5


We had fun with Aromatherapy, lined up for a nice relaxing massage and were finally entertained with a Magic Show!

Everyone who attended had a great day, besides all the fun things to do families had the opportunity to learn more about the genes involved with Joubert Syndrome and Genetic Research that is happening in the UK.

Prof. C.A.Johnson kindly joined us to explain about his research project and was happy to answer any genetic questions that families had.

Most importantly JSUK Families were able to have the opportunity to sit and talk to each other in a relaxed enviroment, form new freindships and support each other.

None of this would have been possible without the generous donations that have been made to JSUK, along with our Volunteers who gave up their time and energy to support us on the day.




Information contained on this website is not intended to replace information you have received from Doctors or other Health Professionals.
You should always consult with a Medical Professional for medical advice.
JSUK does not endorse any products nor can we be held responsible for any external links and their content.
Copyright 2010 - 2015  WWW.JSUK.ORG