Rett UK - Family Support Helpline
Description of service
Provide support to families, carers and professionals involved with people with Rett syndrome. The support team provides a valueable life-line for families across the UK from pre-diagnosis through to end of life support. Offer practical help, information and a listening ear to enable families to cope. If the team is unable to deal with a particular question then Rett UK has a network of professionals who will be able to help, ranging from paediatricians, geneticists, epileptologists, dieticians and physiotherapists. Provide a number of specialist Rett Clinics in partnership with the NHS. Website has free information leaflets and papers to download.