Charities & Organisations

Be a part of SUDEP Action Day

SUDEP Action Day is a special day which brings organisations and people together to raise awareness of SUDEP worldwide. Originally launched on 23 October 2014 by SUDEP Action (as SUDEP Awareness Day), it shines a light on the largest cause of death in people with epilepsy, helping empower people through increased awareness.

Last year nearly 100 organisations took part – this year we need your help to get even more people, organisations and health professionals involved!

Why is it called SUDEP Action Day? Because there are 21 epilepsy-related deaths a week in the UK alone – awareness is not enough, it is time to take action!

This year's theme (2020) - #SpeakUp2SaveLives

As leaders in SUDEP and epilepsy deaths for over 25 years, SUDEP Action know the topic of SUDEP raises questions and can be worrying for many to think about. But SUDEP Action Day is here to help people take positive steps towards reducing epilepsy risks.

The pandemic has highlighted huge inequalities and we know that SUDEP, epilepsy risks and epilepsy deaths are one of the neglected areas, made worse by COVID-19. Thousands of people with epilepsy, their carers and health workers have report through SUDEP Action’s international research project that:

  • epilepsy risks have worsened,
  • people with epilepsy are having more trouble accessing the care and services they need
  • health professionals are worried their patients are not seeking help if they’re epilepsy is getting worse
  • and bereaved families say pain they have lived with for decades has been made worse during 2020

That is why this year we want you to #SpeakUp2SaveLives and encourage vital conversations on epilepsy risks and SUDEP.

Whether you have a little time, or a lot; if you can #SpeakUp2SaveLives you will be raising much needed awareness which could help people with epilepsy around the world live safely and – help save lives!

Together we can #SpeakUp2SaveLives this SUDEP Action Day!

How you can take part

The support of your organisation is vital to make sure as many people know about SUDEP and epilepsy risks as possible.

How you get involved is entirely up to you, but here are some suggestions on how your organisation can get involved and support SUDEP Action Day 2020.

#SpeakUp2SaveLives this SUDEP Action Day by:

1. Sharing the SUDEP Action Day resources on your social media channels, retweeting messages which will be shared from the SUDEP Action accounts throughout the Day – don’t forget to use the hashtags #SpeakUp2SaveLives or #SUDEPActionDay2020

2. Promoting SUDEP Action Day in your charity newsletters, e-news and on your website, so people can find out how to get involved

3. Encouraging your supporters to talk about epilepsy risks and SUDEPwith their health professional (at their next appointment), patients and families

4. Signpost any families bereaved by epilepsy to sources of specialist bereavement support – bereaved families may comment on your SUDEP Action Day posts, so please prepare a signposting message for them (we can help with some wording if required).

5. Pledging your support by sharing an image on social media of you wearing something orange with the message ‘Together we can #SpeakUp2SaveLives this #SUDEPActionDay2020. Visit the SUDEP Action Day Facebook event page and show your support by clicking ‘attending’

6. Letting us know how you plan to get involved so we can support you – don’t forget to send us images of what you do, so we can share them!

Why your organisation should get involved

Why join us?

No matter how big or small, or where your organisation is in the world, we would love for you to be part of this years’ SUDEP Action Day and #SpeakUp2SaveLives

Nearly 100 organisations joined us in 2019 – will you stand alongside us this year?

There are many benefits to participating in this international campaign. By joining us you will:

  • be a part of a worldwide event to raise awareness of SUDEP which could save lives
  • encourage people with epilepsy to learn about SUDEP and epilepsy risks.
  • be part of a global movement to promote better monitoring of safety and risk in epilepsy
  • have access to free downloadable SUDEP Action Day resources for use on the day
  • have the opportunity to encourage supporters to get involved in campaigns and fundraising on SUDEP Action Day

How to join us:

Don’t forget to use the hashtags #SUDEPActionDay2019 and #5forEpilepsySafety so we can see what you are doing and cheer you on. We also love to see pictures of how other organisations are getting involved so do send them through!

Register your support today and be part of a global campaign to reduce SUDEP and save lives.

For further support and queries contact our Communications team: 

We look forward to you joining us this year!

Participating Organisations





North America




Central America

South America