RETT UK
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Mission Statement
Mission “To improve and enhance the quality of life for all people with Rett syndrome, their families and carers” Company Overview We are the UK's leading national charity seeking to make a difference for people living with Rett syndrome. Our key aims are: • FAMILY SUPPORT To support families and carers and ensure that all people with Rett syndrome have access to best practice in diagnosis, treatment and care. • RAISE AWARENESS To increase the awareness of Rett syndrome and the issues facing all people with Rett syndrome, their families and their carers. • RESEARCH To promote, support and encourage research into the genetic, therapeutic and social aspects of Rett syndrome.
About This Cause
Rett UK is the only UK charity which provides professional support to people living with Rett syndrome across the UK. Rett UK was founded in 1985 round a kitchen table by Yvonne Milne MBE. Since then we have grown to be the leading provider of information to not only families but also medical professionals new to the world of Rett syndrome. Rett UK supports our families through a national helpline, including telephone, email and social media support, co-ordinate Rett specialist clinics in conjunction with the NHS, organise local support groups, as well as regional days and have a dedicated parental contact network. We also provide training for people who are supporting someone with Rett syndrome whether that is in a school, college, day centre, supported living, respite or residential setting. We are a small team working on a national level. We receive NO government funding and rely entirely on donations and grants to fund our work. Over the last 12 months, Rett UK’s support team have helped over 500 individuals. Our Rett syndrome Helpline, the only one of its sort in the UK, is staffed by professionals with many years experience in both childrens’ and adults’ services. As well as advising over the telephone we can: •Write letters on your behalf to e.g. local authorities, health authorities & GP’s to support your case. •Liaise with Rett syndrome specialists on your behalf and support you in person at specialist clinics across the UK. •Meet and advise you face to face, either at individual meetings or through our network of local support groups and Regional Roadshow events. •Provide professionally written information such as our acclaimed National Best Practice Guide and our Family Companion. •Provide training to the professionals in schools, residential homes and day centres that support your child.