Imagine being told the toddler you thought was normal, all be it a bit slow to develop in some areas, in fact, had a rare, complex neurological disorder that robs of them their ability to walk and talk, leaving them needing lifelong 24/7 care. These are the families Rett UK supports. Most GP's and health care professionals have not heard of it, so access to expert information and advice is not only crucial but life changing. With your help, we deliver this to the families where they live.
Rett syndrome (RTT) is a rare neurological disorder affecting 1:12,000 females. Present at birth, it only shows itself a year to 18 months later, when regression occurs and the sufferer is left with a lifelong complex disability often requiring 24/7 care. Access to the expertise needed to ensure the best outcomes for the family and for the Rett person is crucial, especially at key points such as diagnosis. Families feel isolated, scared and frustrated at the lack of local knowledge and support.
Regional Hubs bring together Rett families, Rett UK key advisors and local professionals during a 2 day event at an accessible community venue. High caliber presentations from our key advisers disseminating information across a range of disciplines involved in supporting people with RTT, aimed at families and the people who support them leads to increased local knowledge, more confidence in local services and improved family support networks. Combined, this leads to better outcomes for everyone.
Families support at a local level is greatly enhanced. The health and education outcomes for the child with RTT improve and the family unit is able to function better. Holding 3 Regional events p.a., our KPI would be that 80% of professionals report a greater understanding of RTT and how to apply it to their practice, 80% of families report better support from local health and education services leading to better outcomes for their child, 80% of families report improved family relationships.