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, support, and advocacy 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. We 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. We have a specialist communication team, to offer guidance on communication strategies for those with Ret syndrome, providing free training, information leaflets and training. This team also provides support around education, health and care plans, to ensure the best possible support for those in the education systems to enable individuals with Rett syndrome to reach their full potential.

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-4.30pm


Monday: 9am - 4.30pm

Tuesday: 9am - 4.30pm

Wednesday: 9am - 4.30pm

Thursday: 9am - 4.30pm

Friday: 9am - 4.30pm

Weekends: Outside office hours there is an emergency contact number 07557 850025

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: 17 May 2024


Back to search results