Joubert Syndrome UK

Welcome to Joubert Syndrome UK (JS-UK) a small organisation that supports families or individuals living with Joubert Syndrome in the United Kingdom. We are run by a small committee made up of parents and carers of individuals with Joubert Syndrome and founded in 2007.

We connect families throughout the UK via our Facebook page and a closed FB group so as to be able to share our experiences and knowledge to benefit anyone who is involved with an individual who has Joubert Syndrome.

JSUK works alongside other charities that promote research and benefit anyone who is affected by Joubert Syndrome and we periodically organise meet- up’s for our members in different locations throughout the UK.

Chair – Faith Douthwaite – Secretary – Fiona Shaw – Treasurer – Joanne Rees


  • 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.


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.

Website copyright (C) 2018 Joubert Syndrome UK