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



About JSUK

JSUK Commitee

Chair ~ Faith Douthwaite, Co-Chair ~ Rashi Manak

Secretary ~ Joanne Rees, Treasurer ~ Alan Allcock


  • Provide contact with other UK Families.
  • Support families via telephone, e-mail, online support group and annual Newsletter.
  • Provide opportunities for Families to meet up.
  • Raise awareness of Joubert Syndrome.
  • Work alongside other Charities and Organisations to promote better understanding of Joubert Syndrome.

Welcome to JSUK a support group set up and run by parents and carers of children with Joubert Syndrome, alongside volunteers.

JSUK was formed in November 2007 alongside our website because more and more families in the UK were trying to connect with each other but had no base to begin from.
We aim to support newly diagnosed families by offering a listening ear,connecting families with other members, providing families with the latest news and research on Joubert Syndrome via a yearly newsletter.
We work alongside other Charities and Organisations to provide and promote research and information exchange so that we can continue to better understand Joubert Syndrome and keep members informed of developments.
We have provided families with the opportunity to meet up by organising informal get-togethers in different parts of the UK and will continue to do so, this is a welcome opportunity from families to meet others with Joubert Syndrome as quite often families can be the only family in their area that has Joubert Syndrome.

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