Family information directory

The Nystagmus Network provides a variety of services including distributing information about nystagmus, raising awareness of the condition, and supporting the research into a potential treatment. Contact via online form on website Read more

The Dancing Eye Syndrome Support Group is a registered charity with the principal aim of providing a link for parents of children with Dancing Eye Syndrome both locally and nationally. It also provides support and information to families of children with Dancing Eye Syndrome. Read more

The BDFA offers informed guidance and support to families and the professionals who work with them as well as actively increasing awareness of the disease and funding future research to identify potential therapies and a cure. Read more

The BAMT is a registered charity which acts as the professional body for music therapists and a source of information, support, and involvement for the public. Read more

SUDEP Action are a voluntary organisation dedicated to supporting families affected by Sudden Unexpected Death in Epilepsy and other epilepsy related deaths, together with promoting aware & research around SUDEP. Read more

The Childhood Eye Cancer Trust (CHECT) is a charity dedicated to helping babies, children and their families affected by retinoblastoma, a rare form of eye cancer. It provides support, raises awareness, and funds research. Read more

The Erb’s Palsy Group is a registered charity offering advice, information and support to families affected by Erb’s Palsy. The Erb’s Palsy Group give support to parents, adults, and children, put parents in contact with each other and hold annual events for families. It also produces information… Read more

A support group for parents of children with Autistic Spectrum Disorder. Meets regularly for mutual support and information. Read more

The Ann Craft Trust (ACT) is a registered charity which aims to protect disabled children and adults at risk. It provides information, safeguarding training, consultations, and serious case reviews. The Ann Craft Trust also works closely with organisations and individuals across the UK to raise awareness… Read more

ARCOS is a UK national charity, working to improve life for children and adults who have communication, eating, drinking, and swallowing difficulties. These conditions are often complex, persist throughout life and require specialized, long-term treatment. We promote and provide specialist training, comprehensive therapy, and support… Read more