Rett syndrome is a rare neurological condition requiring lifelong care. Families often experience anxiety, grief, exhaustion, isolation and uncertainty about the future. In our counselling pilot, 91% of participants reported high anxiety and worry, while 64% feared the future. The emotional impact affects mental health, relationships, work and family life, creating a clear need for specialist support.

Following a successful pilot, Rett UK will continue its partnership with Rare Minds to provide specialist counselling for families affected by Rett syndrome. Newly diagnosed families will receive dedicated support through access to counselling and a Newly Diagnosed Family Pack, offering practical guidance, emotional reassurance and information about Rett UK. Counselling helps families manage anxiety, build resilience and cope with the challenges of caring.