Rett Syndrome

Clinic description

Genomic medicine in Manchester has had a long interest in the diagnosis and management of Rett syndrome, and conditions such as Angelman syndrome that may cause a similar pattern of health and developmental problems.

In 2011, at the request of the Rett syndrome association, we established a specialist clinic for women with Rett syndrome.

Clinical service description

We see individuals affected by Rett syndrome with their families and/or carers. Although the clinic was established primarily as an adult clinic, we are happy to see younger people from the North of England, when travel to the other specialist Rett clinics in London (paediatric), Nottingham (paediatric) and Cardiff (all ages) may be difficult.

The clinic is multidisciplinary. It is provided by a clinical geneticist, Dr Catherine Breen, with support from a dietician, Ms Hazel Billson and a physiotherapist, Ms Karen Perry. When possible, a Family Support Worker from the Rett syndrome association also attends. The clinic focuses primarily on current health needs, although the accuracy of the diagnosis is also reviewed.

Referral information

3-4 specialist half day clinics are held each year in Genetic Medicine ,St. Mary’s Hospital. Referrals should be made to Dr Breen.

For further information about these clinics, please contact 0161 276 6206.

Useful information

www.rettuk.org