International
Epilepsy Pathway Innovation in Africa’s (EPInA’s) purpose is to challenge epilepsy in sub-Saharan Africa. From 2019 to 2024, the EPInA team will work in Accra, Nairobi, Kilifi, and Mahenge to improve all aspects of the treatment pathway: prevention, diagnosis, treatment, and awareness.
For more information click here.
Website: epina.web.ox.ac.uk
Twitter: EpilepsyPathway
The International Bureau for Epilepsy (IBE) is the recognised international umbrella body representing national epilepsy associations that have a specific interest in the social aspects of epilepsy and who support people with epilepsy, their families and carers.
The IBE was established in 1961 and has grown to almost 140 chapters in over 100 countries all around the globe.
“We have a vision of the world where everywhere ignorance and fear about epilepsy are replaced by understanding and care.”
The IBE is made up of laypersons and professionals interested in the medical and non-medical aspects of epilepsy. The Bureau addresses social problems such as education, employment, insurance, driving licence restrictions and public awareness.
This is achieved through funding social improvement programmes for people with epilepsy and their families, creating means for worldwide exchange of information and, where possible, setting standards which provide an international policy focus and identity for all persons with epilepsy.
The Bureau also works in close liaison with the International League against Epilepsy (ILAE), an organisation of medical professionals involved in the medical and scientific issues of epilepsy.
Website: ibe-epilepsy.org
Twitter: IBESocialMedia
Facebook: InternationalBureauForEpilepsy
Contact: annlittle@ibe-epilepsy
Pretola Global Health Consulting is an organisation set to secure a better future for people living with Epilepsy, Learning Disabilities, and Autism, through Expert Training.
The Epilepsy Assessment & Management Course (EAMC) has been designed to equip medical practitioners with best practices when caring for people living with epilepsy in Low to Middle-Income Countries (LMICs).
This intensive three-month interactive virtual training is ideal for doctors and nurses in LMICs seeking to develop their knowledge and skills so they can deliver excellent care to their patients.
Sessions will be delivered by leading specialists in the field of epilepsy management.
For more information click here.
Website: pretolaghc.net
Twitter: PretolaGHC
The R-O-W Foundation stands for “Rest of World,” where millions in under-resourced areas suffer needlessly. ROW’s focus is on helping people with epilepsy and associated psychiatric disorders in these under-resourced areas. They provide grants to nonprofit organizations addressing these issues. They envision a future when life-changing medications and other treatments will be available to ALL people, at ALL times, in ALL the world.
Website: rowpharma.org
Twitter: ROW_Foundation
The Young Epilepsy Advocates Hub (YEAH) is a friendly space for young people (ages under 30 years) 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 amongst a community of people without having to first explain themselves or their condition.
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.
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.
Website: ibe-epilepsy.org/yeah-online-community-group-for-young-epilepsy-advocates
Facebook: YEAHepilepsy
We are always updating our directory. If you know of any other credible, legally registered epilepsy organisations who could benefit from featuring on our website, contact us or introduce us here