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I want to meet others

It is well known that bereaved people find comfort from knowing that someone, somewhere understands a little of how they feel. Finding others who have been affected by an epilepsy related death can help to normalise things.

Reading through the personal stories on our website may help you to feel less alone. If you would like to share your story with others please contact our support team:

Tel 01235 772852 Email: support@sudep.org

Epilepsy deaths are often sudden and unexpected, connecting in some way may help you to find some answers to your many questions. Being with others is also an opportunity for you to remove the mask and be yourselves without having to be brave for others.

We provide opportunities for you to connect with others bereaved by epilepsy, via:

  • Our on-line discussion forum
  • Our story pages
  • Our charity meetings
  • Our memorial service

Have you been affected by an epilepsy related death? The SUDEP Action telephone counselling service is a confidential service, available when you need it.

Sadly, access to local counselling services can be patchy, often with long waiting lists. But after the traumatic experience of a sudden death our service can help you:

  • explore your thoughts and feelings
  • discuss strategies that may help you in your day-to-day life.

Telephone counselling is just like a face-to-face session with a qualified counsellor. You can arrange sessions for a time that is good for you. If you are 16 or over, we can offer counselling for up to eight sessions.

Contact our support team now: Tel: 01235 772852 Email: support@sudep.org

Charity Conferences

What is the National Conference?

This annual event is a great opportunity to hear all about what SUDEP Action have been working on and how YOUR support has helped. It’s also a chance to meet and be with people who understand.

What will happen during the Conference?

Conference is a chance to hear from the leading experts and research teams working with SUDEP Action to tackle epilepsy deaths: It’s a great opportunity to hear some inspirational stories from supporters, as well as space and time to be with friends. A full agenda will be available to attendees prior to the event, but to get a better idea, take a look at what happend at this year’s 2019 Conference.

“Excellent event, most informative everbody works extremely hard. At times emotional, which is to be expected, and allows release of emotions……Thank you for making the event worth coming to, and it is always lovely to meet old friends and sadly new ones.” – attendee of the National Conference 2019.

Please note that the SUDEP Action National Conference is mostly attended by those who have been bereaved by epilepsy, rather than a clinical conference (please get in touch if you are a clinician who would like to know more about what we do however).

For more information about the Conference, please do contact us on info@sudep.org or 01235 772850.

Memorial Service

Every three years, SUDEP Action organises a Memorial Service in memory of all those who have died from epilepsy. The service is open to people of all faiths or none. To keep the service inclusive, our supporters help select the readings and music and contribute by reading or providing a musical performance. The service is held in a central location, at St James’s Church, Piccadilly, London.

The service includes a reading of the names of those who have died, (unless they have been read out at a previous service). The name of a loved one can be read out, even if the family are unable to attend.

Information about the service is sent out in the January of the year it is held.

Our next Memorial Service will be held in 2020.

To ensure you receive an invitation please ensure you are on our database by contacting our Support team: Tel: 01235 772852 or email: support@sudep.org

The last Memorial Service was held on Saturday 20 May 2017. The service brought around 165 people together from all over the UK, most of whom stayed for light refreshments afterwards.

A copy of the Order of Service is available to download here.

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