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  • dystonia-matters-digital
  1. Help and support
  2. Our conferences
  3. Dystonia Matters Digital

Dystonia Matters Digital

We are thrilled to present our first ever digital conference ‘Dystonia Matters Digital'.

This year our annual conference will be entirely digital and we have four fantastic 3 hour sessions lined up. Each with a pre-recorded presentation, a live Q&A where you will have the opportunity to ask your questions to a panel made up of patients and specialists, and a networking opportunity.

Along with the professionals who are giving their time and expertise, your voice will be at the centre of the conversation. We are incredibly excited to bring you content that is both interactive and informative. The conference is a mix of practical advice, shared life experiences and an opportunity to look to the future for the dystonia community.

The digital format gives a greater flexibility allowing you to purchase tickets for individual sessions or a full conference ticket, that allows access to all four sessions.

Please note the draft programme, timings and content are subject to change.

Date and times

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The conference will be held over two days, Friday 25th and Saturday 26th of September 2020.

Each day will have two sessions:

Morning sessions: 

  • 9:30am: pre-recorded presentation made available to attendees
  • 11am: live Q&A starts on Zoom
  • 12pm: networking starts on Zoom
  • 1pm: session closes

Afternoon sessions:

  • 1:30pm: pre-recorded presentation made available to attendees
  • 3pm: live Q&A starts on Zoom
  • 4pm: networking starts on Zoom
  • 5pm: session closes

Published: 1st July, 2020

Updated: 24th September, 2020

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Programme

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Campaigning for Change

Friday 25th September 2020, morning session

One of our roles as a national organisation is to magnify the voice of dystonia patients and to raise awareness. Much of our work in this area is facilitated by Neurological Alliances from across the UK. Policy experts will be sharing their thoughts on neurology care and how we represent the community to continue pushing for more awareness and change at a governmental level.

Main speaker:

  • Georgina Carr, Chief Executive of Neurological Alliance England

Panellists:

  • Tanith Muller, The Neurological Alliance of Scotland
  • David Galloway, Northern Ireland Neurological Charities Alliance
  • Rebecca Brown, Welsh Neurological Alliance


Mental Health Matters

Friday 25th September 2020, afternoon session

It has long been suggested that dystonia is “all in your head” and while we know that not to be true, it is a fact that any long term chronic condition can have an effect on your mental health and we are inviting specialists in the field to come and have an in depth conversation about how you can look after your mental health, especially in these incredibly stressful times.

Main speaker:

  • Professor Emeritus Marjan Jahanshahi, UCL Institute of Neurology

Panellists:

  • Mandy, patient speaker
  • Nick, patient speaker


The Future of Neurology

Saturday 26th September 2020, morning session

The future is always uncertain but following the events of the last few months it seems even more so. We’re asking leading clinicians their thoughts on the future of neurology. Clinicians from across the country will be sharing general updates on the NHS, digital innovations such as telemedicine and how their trusts have been impacted.

Main speakers and panellists:

  • Dr Peter Moore and Dr Richard Ellis, The Walton Centre
  • Dr Eoin Mulroy and Professor Tom Warner, UCL Institute of Neurology
  • Dr Jean-Pierre Lin, Evelina London Children's Hospital
  • Dr Kathryn Peall, University Hospital of Wales


Know Your Rights

Saturday 26th September 2020, afternoon session

In partnership with Disability Rights UK we will be sharing advice on a broad range of topics, including the PIP process, your employee rights, and how to navigate the educational system. We know how stressful it can be having to deal with these situations and this session will give you practical tools and tips to help guide you through what can be a difficult process.

Main speaker:

  • Michael Paul, Disability Rights UK

Panellists:

  • Gemma Stevenson, Sky Sports journalist
  • Tully Kearney, World Championship Gold Medallist and Paralympian

Published: 2nd July, 2020

Updated: 24th September, 2020

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Ticket prices

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You can purchase a full conference ticket (includes all four sessions)

Price for full conference ticket per person: £40

Alternatively you can purchase each session individually

Price for each session ticket per person: £10

Dystonia UK members - please enter your member discount code at the checkout to receive a 20% discount on tickets and merchandise.

Tickets are sold on a per person basis. We are operating an honour system and we ask that if more than 1 member per household will be attending that you purchase individual tickets (even if you are sharing a screen).

Published: 3rd July, 2020

Updated: 18th September, 2020

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How do I book my ticket?

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Each session has limited capacity so please do ensure you book early to avoid disappointment.

You can book your tickets here.

Published: 4th July, 2020

Updated: 13th August, 2020

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How do I access the conference?

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All you need is a computer/laptop, internet connection and a pre-purchased ticket.

Once you've purchased a ticket you can find all the information you need for the day in your 'Welcome to Dystonia Matters Digital' email.

Published: 5th July, 2020

Updated: 24th September, 2020

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What does my ticket include?

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Your ticket includes:

  • a digital welcome pack
  • access to the live event

Published: 6th July, 2020

Updated: 31st July, 2020

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