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SUDEP Action
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Making every epilepsy death count
Making every epilepsy death count

15 followers
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Check out the SUDEP Action team #PurpleMannequinChallenge for #PurpleDay - 26 March. We are looking forward to an exciting, bigger, Purple Day this year and with your help we can raise some Purple awareness and funds. Text SAPD01 £3 to 70070 to donate. Find out more about how you can take part in your own sponsored Public Purple Mannequin Challenge. Don't forget to share your video with us: https://sudep.org/purple-day

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SUDEP Awareness Day raises awareness of SUDEP worldwide and highlights steps that people with epilepsy can take to reduce their risk. Join the campaign, download your free awareness resources at www.sudepawarenessday.org/downloads
People with epilepsy, families, health professionals and epilepsy organisations are coming together to stand #UnitedAgainstSUDEP and to raise awareness for #SUDEPAwarenessDay2016 from 21st to 23rd October. For more details visit www.sudepawarenessday.org

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Check out our March enews featuring Jane's Blog highlighting the latest developments around our work with bereaved families and health professionals. Read supporter stories and find out what our fundraisers have been up to.

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This ‪#‎InternationalEpilepsyDay‬ We are happy to announce that the Epilepsy Self-Monitoring App is now free and available to download at www.epsmon.com. The App is also coming to Android in March 2016. Please like and share to help spread the word.

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This article discusses the importance of a charity Epilepsy Deaths Register to developing family based reporting. Family reporting can provide information about an epilepsy death not readily available in health or coronial records. This information is vital for research into prevention of deaths in epilepsy including SUDEP.

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Just published in Seizure European Journal of Epilepsy: Safe and Sound? A systematic literature review of seizure detection methods for personal use co authored by Jane Hanna. The review highlights that evidence led mobile phone apps offering cheap practical self-monitoring offer great potential in the management of epilepsy.

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The use of "Cause Unknown" in sudden deaths in epilepsy takes us back 20 years and devastates families.
Visit our SUDEP Global conversations site for more information on SUDEP: definitions and classifications and why its important that a death in a person with epilepsy is correctly recorded. 
http://www.sudepglobalconversation.com/#!nashef/cdpi

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The Epilepsy Deaths Register provides vital information that
helps us to understand what may have happened and why. If
we are to stop unnecessary deaths from epilepsy then we need
your help. If you feel able to give us information please visit: epilepsydeathsregister.org/
Support is available to help you do this via support@epilepsydeathsregister.org
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SUDEP Action calls for action on maternal epilepsy deaths after death of Mum and her unborn twins

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Read Caron Robinson's story in Fabulous Magazine The Sun raising awareness of ‪#‎SUDEP‬ ‪#‎EpilepsyRisk‬ in memory of her daughter Nikey Robinson. Well done Caron.
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