Ataxia UK

Ataxia UK is the national charity in the UK for people affected by ataxia, including spinocerebellar ataxia (SCA). More than 10,000 people in the UK are thought to have a progressive ataxia. Doctors provide the diagnosis and medical care, and Ataxia UK offers additional information, practical help and support to people with ataxia, their families and carers, and the professionals who work with them.

This page is an independent summary of the main services Ataxia UK offers. Details can change, so check with Ataxia UK directly for the latest information.

Helpline

Ataxia UK runs a confidential helpline for information, advice and support:

• Phone: 0800 995 6037
• Opening hours: Monday to Thursday, 10.30am to 2.30pm
• Email: help@ataxia.org.uk

If the line is busy or closed, you can leave a message and the team will call you back. The helpline can also help if you are having difficulty getting a referral to a specialist ataxia centre, for example by providing supporting letters.

Specialist Ataxia Centres

Ataxia UK accredits specialist ataxia centres. These are NHS clinics where neurologists and nurses with particular expertise in ataxia diagnose and manage the condition and carry out research. There are specialist centres in London, Oxford and Sheffield, including dedicated children's services, and specialist nurse services in some regions.

To be seen at a centre, you need a referral from your GP or neurologist. Referrals are accepted from anywhere in the UK.

Advocacy Service

If you need more specialised help, for example with benefits, employment, education, housing or getting the right care, Ataxia UK's advocacy service can provide information and guidance. It can be reached through the helpline.

Research

Ataxia UK funds research into treatments and a cure for the ataxias and keeps people informed about clinical trials and research news. It also works with researchers and drug companies to help bring new treatments to people with ataxia.

Raising awareness

Ataxia UK raises awareness of ataxia among the public, health professionals and policymakers, including through events such as International Ataxia Awareness Day each September.

Branches and support groups

Living with a rare, progressive condition can feel isolating. Ataxia UK has local branches and support groups across the UK, along with online forums and virtual activities, where people can share experiences, advice and support.

Information resources

Ataxia UK produces free information, including factsheets on different types of ataxia, symptoms and managing daily life, as well as guidelines for health professionals. These are available on its website or by contacting the helpline.

Getting in touch

The quickest way to reach Ataxia UK is by calling the helpline on 0800 995 6037 (Monday to Thursday, 10.30am to 2.30pm) or emailing help@ataxia.org.uk. You can find more information on the Ataxia UK website, listed in the references below.