Brief Description

Imagine being told the toddler you thought was healthy, had a rare, devastating disability that would leave them needing lifelong 24/7 care. A diagnosis of Rett syndrome (RTT) changes lives irrevocably and Rett UK is there to pick up the pieces. RTT is a life limiting genetic neurological disorder causing profound disabilities mainly in females (1 in 12,000). Although present at birth, it is usually undetected until a major regression occurs at around the age of 2, when children lose acquired skills and the complexity of the disability is revealed. Multiple comorbidities exist. Rett UK provides the emotional
and practical support via a telephone helpline, events and training to over 1200 families. When your GP has never heard of it and the paediatrician has only read about it in a text book, parents feel they are in a black hole. Rett UK is there for them when no one else is.

Vision & Mission

Our purpose...

Rett UK is a national charity dedicated to supporting and empowering people with Rett syndrome and their families.

Our strategic aims are to ...
•	provide professional family-support services, activities and events at a local, regional and national level 
•	educate health, social care and education professionals about Rett syndrome to enable quicker diagnosis and improved standards of care throughout the UK
•	advocate for people with Rett syndrome to be given the support and resources needed to be active communicators 
•	promote, support and encourage research into new therapies and treatments for Rett syndrome

Our vision...
That everyone with Rett syndrome is given every possible opportunity to achieve their individual potential so that they may live their life to the full.

Aims & Activities

The outcomes we want to achieve are: 
• Service users feel connected and less isolated; through our support contact network which includes peer to peer support, local support groups and regional roadshows.
• Service users have improved emotional well-being and resilience, including how to look after their own mental health & physical health especially at critical points e.g. diagnosis, transition and bereavement. 
• The person with RTT has improved the health and well-being; by giving the families and the professionals involved in supporting them, the information they need in a timely and efficient manner.
• Improved family relationships; when the main carer feels supported, less stressed, better able to cope, it facilitates positive relationships in the family, giving time to partners and non-disabled siblings. 
• Maximising the family income or that of the individual with RTT by ensuring they are getting all the benefits and allowances they are entitled to, at the right level.

Facts & Figures

                            Rett UK provides the emotional and practical support needed to deal with the everyday challenges that living with RTT presents. A national telephone helpline answers calls from desperately worried parents, not just at the point of diagnosis but also at key transitions and moments of crisis. Social media in support is increasing importantly and the family support team actively engages with families via social media.  Local family led support groups and a parent-to-parent contact network provide the contact with other families that is so crucial in reducing isolation. Access to high quality seminars from the UK’s leading experts on Rett syndrome at Regional Days and Family Weekends provides families with up to date, accurate information in subjects like epilepsy, spinal surgery and communication, helping them with management of the disability.

With over 30 years experience, Rett UK is the only Rett charity in the UK that is providing professional family support services.
                            

                            Services users are mainly parents of people with RTT, but we also support siblings and extended family members. RTT affects all ethnicities so our
community is very diverse. We provide information and advice to professionals supporting someone with RTT; carers, therapists, teachers and medical.
Families find us through social media and the Internet, rarely referred by a geneticist. After that first phone call, they tell us how they no longer feel
alone and so despairing. We are the first people who truly understand how they are feeling, who can answer their myriad of questions and importantly,
give them the strength to look forward at a time when their whole world has collapsed.
                            

Awards

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