Rett syndrome is the most common cause of profound and multiple disability in females. A complex neurological condition genetic but not usually hereditary, it can occur in any family. Rett UK is a national charity dedicated to supporting and empowering people with Rett syndrome and their families. We offer support, advocacy and advice to all those affected.
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1Rett UK 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 families through a national helpline, including telephone and email support, co-ordinates Rett specialist clinics in conjunction with the NHS, organise support groups and have a dedicated parental contact network.
We are a small team working on a national level. We receive NO government or lottery funding and rely entirely on donations and grants to fund our work.
A quote from one of our families...
"Exceptional support! I have phoned Rett UK numerous times and have always found the staff informative, professional, with the ability to empathise. I am always left with the feeling that I’m not alone in my struggle to secure the best for my daughter. Rett UK go above and beyond and I can’t thank them enough!"
