News

Phishing is a scam where fraudulent emails are sent to people in an attempt to trick them into revealing personal or financial information. There appears to have been an increase in such emails targeting non-profit organisations such as patient associations. Today we have been notified of a number of emails being received that claimed to have been sent by a member of the IBE Executive Committee. These emails are fraudulent and have nothing to do with IBE. When dealing with uninvited contacts from people or businesses, whether it's over the phone, by mail, email, in person or on a social networking site, always consider the possibility that the approach may be a scam. How to identify a phishing email Don’t trust the display name: A common phishing tactic is to spoof the display name of an email, i.e. make it appear as if it came from IBE. This fraudulent email, once delivered, can appear legitimate because most user inboxes only present the display name. Don’t trust this. Check the full email address — if it looks suspicious, delete the email. Don’t give up personal/financial information: We will never ask for financial information via email. If an email requests this information it [...]

International Epilepsy Day, a joint initiative created by the International Bureau for Epilepsy (IBE) and the International League Against Epilepsy (ILAE), is a global event celebrated annually on the 2nd Monday of February, to promote awareness on epilepsy right around the world. International Epilepsy Day events and participation were seen in 144 countries around the world on February 10th, making International Epilepsy Day 2020 the biggest yet! Download the report for information on events around the world as well as a report of social media activity on the day.

To celebrate International Epilepsy Day 2020, we held an international art competition, for all ages, with the theme ‘Friendship and Inclusion’. There were three categories – under 8 years of age (age as of 31st December 2019); between 8 years and 15 years of age (ages as of 31st December 2019) and 16 years of age and older (age as of on 31st December 2019). The competition was open to everyone! Congratulations to our winners and thanks to everyone who took part in the competition this year. The judges had a difficult job as there were so many wonderful entries. Epilepsy has truly been put in the picture through the participants’ creative talents. These artworks tell of the personal experience of epilepsy through visual language, allowing the viewer the gain a greater insight to both the artist’s world and the condition. You can see our winning entries below, or click here to view all entries and our runner-up winners too!   Over 16s Winner: 1st Prize – US$250: ‘Heart of service’ Aja Mills, United States Age 8 – 15 Winner: 1st Prize – US$250: ‘Love what we have’ Chi Tin Cheng (11), Hong Kong   Under 8s Winner: 1st Prize – [...]

The Young Epilepsy Advocates Hub (YEAH) is a friendly space for young people who are undergoing diagnosis or living with epilepsy. YEAH provides access to an online community of friends from all over the world who are dealing with similar issues and challenges. Members can talk among a community of people without having to first explain themselves or their condition. YEAH is an initiative of the International Bureau for Epilepsy (IBE), and has grown out of a previous project by the Scottish Epilepsy Initiative (SEI) named The TEA Room. The TEA Room, founded in 2010, was a website forum for 13-19 year olds living with epilepsy around the world. Due to changing technologies and the rapid growth of social media platforms it was felt that YEAH would be most accessible and best support the needs of its audience by becoming a Facebook Community Group. The aim of the project is not only to provide a space for young people to communicate but to provide a platform that encourages their growth as advocates for epilepsy. Members will be encouraged to raise awareness by sharing their stories and engaging with patient groups at local, national and even international level. Join the conversation at [...]

Epicare ERN has launched a series of educational webinars with #epilepsy related topics presented by internationally renowned experts. The webinars are scheduled for the third Thursday of the month at 4pm GMT. The online seminars are free to attend but require previous registration. 2020 Webinar Schedule 27 Feb THU 17:00 -18:00 CET Katarzyna Kotulska et al: TSC-related epilepsy https://register.gotowebinar.com/register/5915017819582901005 26 March THU 17:00 -18:00 CET Cecilie Johannessen Landmark : Therapeutic drug monitoring of antiepileptic drugs https://attendee.gotowebinar.com/register/7224411923450947084   23 Apr THU 17:00 -18:00 CET Albert Becker, Tobias Baumgartner, Christoph Helmstaedter, Rainer Surges : Diagnosis, treatment and prognosis of limbic encephalitis https://register.gotowebinar.com/register/4163457313629685772   28 May THU 17:00 -18:00 CET Milan Brázdil: Epileptic seizure semiology: What can be inferred from ictal behavioural manifestations for clinical practice? Temporal lobe epilepsy https://register.gotowebinar.com/register/1005115660401427980   25 Jun THU 17:00 -18:00 CET Sameer Zuberi: Diagnosis and treatment of epilepsy related to Ring Chromosome 20 Syndrome https://register.gotowebinar.com/register/7192765779780856332   30 Jul THU 17:00 -18:00 CET Sándor Beniczky: Role of EEG in diagnosis and management of status epilepticus https://register.gotowebinar.com/register/3220936155091248652   27 Aug THU 17:00 -18:00 CET Kari Modalsli Aaberg: Epidemiology in childhood epilepsy https://register.gotowebinar.com/register/4694836989683140364 24 Sep THU 17:00 -18:00 CET Joseph D Symonds:: Incidence phenotypes and outcomes of epilepsy <3 years: a [...]

On 9th of April 2019 I received an email that would allow me to advocate for epilepsy on an international scale with it I can help epilepsy get the respect it deserves and hopefully people living with it accepted not judged. The email was from Ann Little who is the Executive Director of the International Bureau of Epilepsy, congratulating me on my success of overcoming my own personal journey with epilepsy, as well as the many voluntary hours I have put into helping others right across Australia going along the same at times a very confronting epilepsy journey. The email stated that for the first time International Bureau of Epilepsy would be acknowledging 8 recipients from each of the their World Regions. These acknowledgements would be named the Golden Light Awards to bring a shining light to those who have turned their epilepsy in to the power of helping others. The awards would be presented in Bangkok at the 33rd international congress along with the receiving our awards we would each give a presentation telling our story. From the moment the 8 of us met in Bangkok there was an instant connection that we had known each other all our lives [...]

In October 2019, the IBE plans to hold the ‘Hear My Story’ workshop for young adults with epilepsy living in Europe. The event will run over a weekend, from Friday 4th to Sunday 6th, and will gather 20 young adults from across Europe who are personally affected by epilepsy. These young adults may have a diagnosis of epilepsy or may be impacted by a parent or sibling having epilepsy. Why? In Europe, IBE represents 57 associations (our chapters) in 37 countries. There is wide recognition amongst our chapters that young people are currently under-represented in their associations. This poses the risk of undermining the future potential of epilepsy associations or, at worst, putting their very future in jeopardy. It is also felt that the issues facing young people affected by epilepsy are not getting the public or political attention they should. Yet the diverse range of experience and the remarkable personal resilience that a large number of young people with epilepsy already demonstrate is going unnoticed because many feel ill-equpped to report on their achievements. Those living with epilepsy face a number of additional burdens as young people. At times, they are unable to complete their education to [...]

An Australian-first telephone and email service to support people living with epilepsy and their families has been launched today by Epilepsy Action Australia, the country's longest serving provider of education and support services to people with epilepsy. The Epilepsy Nurse Line, which is available from 9am to 5pm seven days a week in all Australian states and territories, has been funded by the Australian Government Department of Health, addressing a condition that the World Health Organisation (WHO) refers to as 'neglected'. WHO also declared that addressing the quality of life of people affected by epilepsy is a public health priority. Carol Ireland, CEO of Epilepsy Action Australia, said, "The Epilepsy Nurse Line has been developed specifically to improve health outcomes for people affected by epilepsy. Each call will be answered by a Registered Nurse with special training in epilepsy management, so callers can trust that the information they receive will be accurate and safe." Minister for Health, Greg Hunt said, "People living with epilepsy in Australia now have a trusted and responsive resource they can count on for all kinds of information related to their condition. "The Epilepsy Nurse Line will greatly reduce the amount of time it would otherwise take [...]