Only a few months have elapsed since the inception of the new leadership of the League. Not fully by coincidence, this issue of Epigraph highlights many themes which our leadership considers top priorities — if we want to summarize them in short, reaching outwould be the magical words.
The previous term saw some remarkable successes in sensitizing the general public, institutions and governments about the need to improve the lives of people with epilepsy — examples include the Declaration of Epilepsy by the EU Parliament, the Institute of Medicine Report in the U.S., and the Pan American Health Organization (PAHO) Epilepsy Action Plan. We need to follow up on these initiatives to ensure that they are implemented in a timely manner.
Indeed, concrete actions have already materialized, most visibly in the EU through allocation of about 36 million euros to epilepsy research. As discussed in the Curing Epilepsy and Dublin Epilepsy Forum reports, additional actions to promote epilepsy research are under way in different parts of the world. To facilitate cross-fertilization among these initiatives, ILAE and IBE have now created a trans-regional Global Research Advocacy Task Force, being led by Dr Shichuo Li of China.
There are unacceptable disparities in epilepsy care both within and between countries, with over 80% of people with epilepsy in the world not receiving appropriate treatment. Reaching out to them is a moral imperative. Every action counts, and there is much to learn from the work of some of our Chapters and many enlightened individuals — the stories about the epilepsy caravans in Senegal and the North to South collaborative program in Perú are great examples illustrated in this issue of Epigraph. Improving access to epilepsy care is a priority which the League is pursuing at global level in collaboration with our many partners, including IBE and WHO, but we are also eager to promote national and regional collaborations towards this goal. The most important resource to improve epilepsy care is knowledge, and through our Congresses, educational courses, journals and the work of our Commissions we are making significant investments to advance and disseminate our understanding of the epilepsies and their management.
People with epilepsy suffer not only from lack of appropriate care, but also from stigma and discrimination resulting from widespread prejudice and ignorance. To fight this plague, reaching out to the general public is as important as educating health personnel, a point nicely made in Dr Li Min Li’s report on the „Scientjournalist“ initiative. Our newly formed Communication Task Force, that includes representation from the lay associations, is fully aware of this and will use the opportunities offered by modern IT technology to promote effective dissemination of knowledge both to professionals and to the general public.
An important initiative that the League is currently bringing to completion is the operational definition of epilepsy, which complements the 2005 conceptual definition. The process of vetting the proposed definition, now being applied for the first time, is another example of reaching out, as it involves posting the document on the League’s website, soliciting feedback from our constituency, and ensuring that all suggestions and criticisms received are duly considered in the finalization of the paper. The participation of our community in this exercise has been overwhelming (see report) and extremely gratifying for all of us. Ensuring optimal understanding and application of the operational definition will also require a major communication effort, which we plan to carry out jointly with lay associations and other scientific societies. It is only though reaching out that we will be able to move our mission forward effectively, and to achieve that goal, I look forward very much to working with all of you.