Actions related to International Bureau for Epilepsy during my term as President 2013–2017

Abstract

Summary The International Bureau for Epilepsy (IBE) Executive Committee for the term 2013–2017 began in June 2013 during the 30th International Epilepsy Congress in Montreal. From the beginning, our primary goals were to fulfil the mission of our organisation and address problems such as awareness, education, and social issues, while promoting and protecting the human rights of persons with epilepsy (PWE) and improving trans-regional equity in access to health care services, improved prevention, diagnosis and treatment and as a consequence, a reduction in the treatment gap and alleviation of stigma worldwide. By so doing, the quality of life of PWE and those who care of them will be significantly improved. In order to achieve these aims, the IBE joined forces with the International League Against Epilepsy (ILAE) and also the World Health Organisation (WHO), regional and national IBE organisations and other stakeholders. In addition, the participation of the IBE President in many national epilepsy events worldwide has helped to promote care and human rights of PWE nationally. A major awareness event accomplished during our term in office was the launch of the International Epilepsy Day in 2015. An IBE-ILAE event celebrated the 2nd Monday in February each year at the European Parliament with the participation of many stakeholders, PWE and advocates for epilepsy MEPs. In 2014 in order to improve access to care, treatment, appropriate treatment for PWE worldwide, particularly in developing countries, we developed our strategy plan becoming IBE’s roadmap up to 2019 and with strategic priorities to establish epilepsy as a health priority worldwide. In June 2014, in Troina, Italy, WHO, ILAE, IBE and the Global Outreach Research Task Force organised a workshop to discuss how to improve access to antiepileptic medicines in low- and middle-income countries and, as a consequence, to produce a white paper. A unique historical achievement during our term in office was the approval from WHO and subsequently from World Health Assembly (WHA) (May 26th, 2015) the Resolution on the Burden of epilepsy, and calls on United Nation Member States to implement the WHA68.20 actions and for WHO to report back in 2018. The creation by IBE/ILAE in 2016 the legal entity Epilepsy Alliance Europe has given the opportunity for both organizations to play a partnership role in many research projects aiming to reduce the epilepsy burden in Europe and worldwide.