Rett syndrome clinics in the UK

The right clinical care is essential for children, young and adults with Rett syndrome because of the unique combination of debilitating medical symptoms and disabilities involved in having the disorder.

This is largely because many doctors, even consultants, might not have met someone with Rett syndrome before. Sometimes they haven’t even heard of it.

Although there are some specialist Rett syndrome clinics in the UK, depending where in the country you live, it can be difficult to get a referral to them. 

You can find more information and contact details for these clinics and the doctors who run them below.

Long term follow up care/clinical management

Even if you can get into a specialist Rett syndrome clinic at diagnosis, ongoing follow-up, long term intervention and or co-ordination with your local area clinicians is often not possible. 

With a life long, ever-changing multi-system disorder like Rett syndrome, as well as obtaining specialist help, it is really important for families to find a local doctor they can rely on to help manage the individual’s overall health, whether this is the Community Paediatrician, Consultant Neurologist or GP. 

UK Rett syndrome clinics and doctors

Below you can find a list of doctors with an identified special interest and expertise in Rett syndrome. Each clinic is different, some only run on a handful of days a year seeing a small number of patients, whereas some have much more frequent clinics and a higher number of patients.

Only two UK Rett syndrome clinics see adults as well as children; these are the CIPP Rett Centre and Manchester Rare Conditions Centre. 

Referrals to these clinics will typically need to be made by a consultant, or community paediatrician. This excludes the CIPP Rett Centre which accepts direct referrals from families, patient organisations such as Reverse Rett or clinicians as appropriate. 

If you need further information about a referral to any of the clinics, please get in touch. 

At Reverse Rett, we are actively seeking clinicians with an interest in Rett Syndrome, those who are interested in developing Rett-specific provision and those who may be interested in delivering emerging Advanced Therapy Medicinal Products as and when they are shown to be safe and effective. Please contact [email protected] for further information