Join our team

We are looking for a community fundraiser to join our busy and friendly team. Part Time 1 year contract (21 Hours Per Week) in London. Up to £27,000 p.a. pro-rated and dependent on skills and experience. This exciting opportunity will be the first point of contact for new and existing donors and supporters, helping us to build important funding relationships across our wide range of supporters. Read more

Research study now recruiting

Research study now recruiting adult and paediatric patients who have a DBS implant for primary dystonia Read more


A team of researchers at the Oxford Eye Hospital, based at John Radcliffe Hospital, have created a device designed to help individuals with Blepharospasm. Read more

Understanding symptoms associated with eyelid spasms

Dystonia Society UK and Fight for Sight are funding researchers from Cardiff University to identify the symptoms associated with blepharospasm. Read more

Grand Draw 2018

Here is your chance to win £1000 and support the Dystonia Society too! Read more

We need your votes!

We have been selected by Aviva to be one of the charities in the running for up to £25,000. Read more

Neurological patient experience survey

Make your voice heard on dystonia care. Complete the Neurological Alliance survey to tell us about your experiences. Read more

Introducing your young champions

We are so happy to introduce you to three of your new young champions. Read more

Thank you

Thank you to everyone who attended our big Conference for Parents and Carers of Children with Dystonia on Saturday 22nd September. Read more

Support group meetings in September

Join one of our support groups at a meeting this September. Read more

Survey of Young Europeans with Neurological Conditions

EFNA has recently published a report of findings from their Survey of Young Europeans with Neurological Conditions. Read more

David Marsden Award 2019

The David Marsden Award 2019 is offering 10,000€ to stimulate research on dystonia. Read more

Dystonia Essay Competition winners

We are delighted to announce the winners of our Dystonia Essay Competition for medical students. Read more

Awareness in Wales

John Meredith met with Dawn Bowden AM last week on behalf of dystonia patients and members of The Dystonia Society. Read more


Even when shopping online you can raise funds for the Dystonia Society! Read more

Let us share your news

Your voice is really important, so we would love to hear from you with any ideas, news or stories you might have for inclusion in Dystonia Matters, on our website, e-bulletins and social media platforms. Read more

Children's conference

There are still places available for our FREE Children's Conference being held on 22nd September 2018 in London. Book early to avoid disappointment! Read more

Support group meetings in August

Join one of our support groups at a meeting this August. Read more

Give as you Live

Raise funds for The Dystonia Society with your weekly grocery shop. Read more

Introducing Dayna Ferdinandi

Introducing your new Head of Fundraising and Communications - Dayna Ferdinandi Read more


Every time you buy something from AmazonSmile, they will make a donation! Read more

Dystonia Europe Survey

Your personal dystonia experience and input can benefit the dystonia community today and in the future. Read more

Introducing Flavie Belanco

Introducing your new Fundraising Assistant - Flavie Belanco Read more

Dystonia Europe 25th Anniversary Conference videos

If you were not able to make it to Dystonia Europe's 25th Anniversary Conference & D-DAYs 2018 in Brussels, don't worry you can watch videos of the event online. Read more