SUDEP Global Conversation gains momentum in Asia
The Congress, which attracted more than 1,000 delegates, was also an opportunity to raise awareness of global initiatives on SUDEP including the book: SUDEP – continuing the global conversation and SUDEP Action’s Call for Openness.
Thanks to sponsorship from the Western Pacific Region of the International Bureau for Epilepsy delegates attending were each offered Sudden Unexpected Death in Epilepsy; continuing the global conversation, a book which combines a collection of considered observations by leading experts around the world with the moving accounts by families bereaved by SUDEP.
This brings the total number of books distributed to epilepsy communities around the world by 2014 to 16,000. The book’s website www.sudepglobalconversation.com has received almost 300,000 hits.
The success of the global conversation is attributed to a powerful three-way collaboration between SUDEP Action, Epilepsy Australia and Canada’s SUDEP Aware, which together reach out to research teams from many countries and over 60 experts from around the world, enabling effective distribution. It follows SUDEP Action’s (the working name for Epilepsy Bereaved) campaign during the 1990s, which sparked a partnership between the UK charity and Epilepsy Australia in 2005.
Dr Rosey Panelli, International Research Officer at SUDEP Action attending the conference said: “By working together we can push forward the global conversation on SUDEP which is vital to research and action on SUDEP and epilepsy-related deaths wherever we are in the world.”
The conference was also an opportunity to raise awareness of the Call for Openness on SUDEP. Initiated by SUDEP Action in 2013, the call is supported by Epilepsy Australia, SUDEP Aware, International League Against Epilepsy (ILAE); IBE and 13 other epilepsy organisations around the world.
To sign up for the Call for Openness on SUDEP visit https://www.sudep.org/call-openness-campaign
Click here to follow the SUDEP Global Conversation on Facebook
Click here for references to recent SUDEP research