Every five hours
a girl is born with
Rett syndrome.
A severe neurological
disorder that is
potentially curable.
Contact information
Family Support – 01582 798911
Enquiries – 01582 798910
support@rettuk.org
info@rettuk.org
fundraising@rettuk.org
Useful websites
Carers UK – www.carersuk.org
Epilepsy Action – www.epilepsy.org.uk
Mencap – www.mencap.org.uk
Scoliosis Association UK – www.sauk.org.uk
Contact a Family – www.cafamily.org.uk
Rett children appear to be born perfectly
normal but by 18 months they start to regress.
They lose hand function, can no longer hold
toys or feed themselves. By age three they
could start having seizures, stop talking,
walking and steadily their spine could start
to curve.
Rett syndrome is the most common genetic
cause of severe disability in females and less
commonly in males, yet very few people have
ever heard of it.
People with Rett syndrome have profound and
multiple physical and learning disabilities and
are totally reliant on others for support
throughout their lives.
Rett UK, Langham House West,
Mill Street, Luton, LU1 2NA
info@rettuk.org 01582 798 910
www.rettuk.org
Registered charity 1137820
Registered Company in England and Wales: 07339522
What is
Rett syndrome?
Who we are
Rett UK is a registered national charity
dedicated to making a real, positive and lasting
difference to people living with Rett syndrome.
We provide vital services for families, carers
and professionals.
Our aims are:
To support families and carers and
ensure that all people with Rett syndrome have
access to best practice in diagnosis, treatment
and care.
To promote, support and encourage
research into the genetic, therapeutic and
social aspects of Rett syndrome – and towards
an eventual cure.
A wide range of accessible written and
video information
Developing professional knowledge
and expertise
Liaison with a multi-disciplinary team
of experts
Local work with professionals to
establish knowledge and good practice in care
and management
Supporting and funding research, including
working towards a cure
Working in partnership internationally
Quarterly Rett News magazine
To increase the awareness of Rett
syndrome and the issues facing all people with
Rett syndrome, their families and their carers.
What do our
supporters say
What we do
“Just having contact and knowing that you are
there to help give us some direction has given
us a little bit of help back. I feel that we’ll be far
better equipped to request the support that
we know our daughter needs.”
Parent of Rosy (aged three)
We ensure that all people with Rett syndrome
have access to best practice in diagnosis, care
and treatment by:
Proactive support for families via our
Family Support Service
Self-help support groups and a network of
contact supporters
Telephone support seven days a week
Annual Family Weekend which gives
information, support and respite care
Regional Family Days offering mutual
support and information
“Your support and help during the past few
traumatic months has been more valuable to
me than you could ever realise and I can’t
thank you enough for your kindness.”
Parent of Katy (aged eight)
“We feel very privileged to have had this
chance for our daughter to be assessed by
such a distinguished group of professionals.
We must thank you for your work in putting us
in touch with the clinic.”
Parents of Anna (aged 41)