Rett UK - Family Support Helpline

Contact details

Rett UK - Family Support Helpline
Victory House, Chobham Street

Public phone: 01582 798911 - Telephone Helpline for families & professionals, caring, support or working with children, young people & adults with Rett syndrome


Website URL:

General information

Service offered: We provide information, advice & guidance to families, carers and professionals involved with people with Rett syndrome. The support team provides a valuable life-line for families across the UK from pre-diagnosis through to end of life support. Offer practical help, information and a listening ear to enable families to cope. We provide advocacy support to individual and their families, to ensure they receive the best care & support available. In the unlikely event on of the team is unable to deal with a particular question then Rett UK has a network of medical/clinics/therapeutic professionals who will be able to help, ranging from paediatricians, geneticists, epileptologists, dieticians and therapists. Support a number of specialist Rett Clinics in partnership with the NHS. Website has free information leaflets and papers to download

Target group: Families, carers and professionals involved with people with Rett syndrome.

Area served: UK

How to contact: Phone (01582 798911), Email, Facebook and Website. Open Monday to Friday 9am-4pm


Monday: 9am - 4pm

Tuesday: 9am - 4pm

Wednesday: 9am - 4pm

Thursday: 9am - 4pm

Friday: 9am - 4pm

Weekends: Out of hours emergency contact number

Office Hours:


Wheelchair access: Yes - full

Accessible toilets: Yes

Access notes: No on site parking, large car-park nearby, charges apply. Large disabled toilet, no Changing Places facilities

Other information

Languages other than English:

Charity number: 1137820

Year established: 1989

Staffing: 2 full time 5 part time

Public transport:

Record last checked: 01 June 2023


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