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Erin Davies Congratulations to Erin Davies, a young epilepsy awareness advocate from the UK, who has become a member of the European Patients' Forum (EPF) Youth Group. Erin attended the IBE's Young Adult Summit in Dublin last year. The EPF Youth Group is made up of young patient representatives between 15-29 years old. They all have different chronic conditions and they come from all over the EU. The aim of the EPF Youth Group is to become the reference group of the young patient community and its role is to communicate the needs and expectations of young patients to EPF and its members. Erin is originally from Wales but is based in Belfast. She was formally diagnosed with epilepsy in 2013 and has been an epilepsy awareness advocate for almost 5 years, working alongside Epilepsy Action and the International Bureau for Epilepsy. She's employed by a humanitarian organisation as a Recruitment & Selection Co-ordinator and is passionate about the promotion of diversity and inclusion.

Dear Friends, As you may know, Richard Holmes recently retired as International Director of Meetings (IDM) for IBE and ILAE. Richard Holmes I first met him when we both were members of the scientific and organising committees for the Epilepsy Europe Congress that took place in Glasgow back in 1992. The success of this meeting led to the setting up of the biennial ILAE European Congresses on Epileptology, the first of which was in Oporto, Portugal in 1994. The same year, in parallel, IBE held its own European Congress on Epilepsy and Society in Veldhoven, Netherlands. When I became Chair of the ILAE Commission on European Affairs in 1997, Richard, who was by then IBE President, was appointed as a member of my team. Following my election as ILAE Vice President in 2011, I was tasked by the then president, Giuliano Avanzini, with developing joint regional congresses in Europe, Latin America and Asia and Oceania. This led to my working closely with Richard for an interesting 4 years, since he was by that time the IDM for both organisations. We carried out onsite inspection visits to Mexico City, Guatemala, Bali, Bangkok, Kuala Lumpur, Madrid, Vienna, Helsinki, and Xiamen. During [...]

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 [...]