Rett syndrome is a rare, complex neurological disorder present from conception but it does not itself until the child is around 18 months, when regression occurs and key skills are lost. The child will need 24/7 lifelong care. The diagnosis and subsequent caring emotionally impacts not just individuals, but families, relationships, finances, work-life and future choices. It frequently involves low mood, anxiety, emotional exhaustion, and may also at times lead to suicidal thoughts or intention.

Rett UK are partnering with Rare Minds who advocate for, and provide, specialist mental health support for the rare disease community. All of the counsellors are experienced and registered therapists, trained both in the psychological and emotional aspects of rare disease, and also in providing video or telephone counselling.