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.
It occurs annually on the third Wednesday in October, this year will be on
Wednesday 19 October 2022.

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 for change!


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

Not everyone with epilepsy is aware of, or told about SUDEP (Sudden Unexpected Death In Epilepsy) and epilepsy risks, which can put them in danger of worsening seizures, injury or of dying prematurely. Some health professionals worry that discussing these risks could frighten their patients. But these harms can be prevented for many people with epilepsy; and openly discussing these risks allows them to make informed choices about treatment and lifestyle and helps them take steps to reduce any risks.

People with epilepsy & their families WANT to be told about SUDEP and epilepsy risks. Many bereaved families were NOT told about SUDEP & wish that this vital information had been shared as it might have saved their loved one’s life.

It is time to change this this. So that every person with epilepsy, their families and health professional are not only aware of these risks (which can lead to death if ignored) but are able to take an active role in discussing, reviewing and reducing them.

Whether you have a little time, or a lot; if you can take time to show how it is time to change how we tackle SUDEP and epilepsy risks, you will be raising much needed awareness which could help people with epilepsy around the world live safely and – help save lives!

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 #Time2Change

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


For further support and queries contact our Communications team: 

We look forward to you joining us this year!

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 2021.

Take #Time2Change 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 #Time2Change or #SUDEPActionDay2021. SUDEP Action Day messages will be shared via the SUDEP Action social media accounts – making them easy to share online.

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 SUDEP with 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 of the day by sharing an image on social media of you wearing something orange with the message ‘It’s #Time2Change how we talk and think about #SUDEP & epilepsy risks – that’s why I support #SUDEPActionDay2021.’ 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!

Participating Organisations





North America




Central America