JSUK - Joubert Syndrome in the UK

Web: www.jsuk.org

JSUK an organisation set up and run by parents and volunteers for families and carers of children with Joubert Syndrome. The organisation was formed in November 2007. They 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.

Their aims:
  • Provide contact with other UK families.
  • Support for families via telephone, e-mail.
  • Provide opportunities for families to meet up.
  • Raise awareness of Joubert Syndrome.
  • Exchange information around children's development.

Last updated on 21/07/2012