Welcome to JSUK an organisation set up and run by parents and volunteers for families and carers of children with Joubert Syndrome. Our organisation was formed in November 2007 along with our website. We hope to continue reaching more families and raising awareness of Joubert Syndrome. We aim to support newly diagnosed families by providing a listening ear from other parents of children with Joubert Syndrome who will have some understanding of how they may feel at the time of diagnosis.
Chair ~ Faith Douthwaite Vice-Chair ~ Rashi Manak
Secretary ~ Joanne Rees Treasurer ~ Alan Allcock
• Provide contact with other UK Families.
• Support for Families via telephone,
• Provide opportunities for Families to meet up.
• Raise awareness of Joubert Syndrome.
• Exchange information around our children's development.
There is an online Parent's Room accessed via e-mail for continuing support.
We also exchange information around our children's development.
The Parent's Room is only open to families and carers of Joubert Syndrome for privacy.
We aim to provide families with the opportunity to meet up by organising informal get-togethers in the North and South of England.