We’re with you every step of the way, so if you’ve had a referral to a Rett syndrome clinic we’ll be there to support you.
Rett syndrome clinics are run in partnership with Rett UK and the NHS. They are multi-disciplinary clinics that give you access to consultants with specialist knowledge of Rett syndrome as well as dedicated healthcare professionals such as speech and language therapists, physiotherapists, occupational therapists and music therapists. Clinics last around one and a half hours.
Representatives from our Family Support Team attend the clinics so you won’t be on your own. It can seem quite daunting meeting so many medical people but we’ll be there to guide you through everything as well as provide emotional support. Following your visit to the clinic, you’ll be sent a report and we’ll talk this through with you and discuss what further help you may need.
There are currently four Rett syndrome clinics…
Bi-monthly clinics for children and young people up to the age of 19 are held at the Evelina Children’s Hospital at Guys and St Thomas’ . They are led by Dr Hilary Cass, a consultant in paediatric neurodisability. You can read more about the clinic here
A twice-yearly clinic primarily for adults (19 and over) and families with a CDKL5 or FOXG1 mutation, though children can also be seen here. It’s held at St David’s Children’s Hospital and led by Professor Angus Clarke, consultant in Clinical Genetics.
A twice-yearly clinic for under-19s is held at Nottingham City Hospital, led by consultant paediatrician Dr Jane Williams.
A twice-yearly clinic for adults only is held at Royal Manchester Children’s Hospital (which is where the genetic centre is). It’s led by Professor Jill Clayton-Smith who has a special interest in Rett syndrome.
* A referral needs to be made by the GP, consultant or paediatrician assigned to your daughter or son. For further information please contact our support team on 01582 798911 or email email@example.com
Top Ten Tips for Attending a Rett Clinic
- Remember to allow plenty of time for your journey and parking.
- Check parking arrangements – these may be limited.
- Bring plenty of change for parking machines.
- Arrive in plenty of time so that you and your daughter/son are calm and relaxed.
- Bring drinks and snacks; sometimes it can be a long wait.
- Remember to bring a list of all current medications and dosages.
- Remember to bring a note of all professional involved; their names and contact details are helpful.
- Write a list of all the information that you would like to know; it will help you to remember on the day.
- If you daughter/son uses a communication aid/passport, if you are able to bring these too they can be helpful.
- Some clinics have large teams and this can be daunting when you see all the people there. They are there to help and advise. In addition, someone from Rett UK will be there too for support.