EAAC5: Day One of Conference Report

The first day of the conference, discussed strategic priorities, grassroots advocacy efforts, and challenges in epilepsy care across African regions. The discussion covered various aspects of epilepsy care in Africa, including medical facility capabilities, tele-medicine programs, and the upcoming Stripes Week initiative to increase global visibility of epilepsy.

Key lessons

• Let us all join forces with the neurological community for IGAP implementation, using epilepsy as an entry point.
• Let us utilize WHO resources and documents with WHO logos for communication with healthcare authorities and ministers.
• We urge support for grassroots organizations through volunteering, donations, education, amplifying local stories, and advocating for policy change in communities.

Opening

The fifth Epilepsy Alliance Africa Conference was introduced by Professor Najib, who welcomed participants from 35 countries and highlighted the organization’s activities including telemedicine, campaigns, medication provision, and professional education. The meeting started with the African Union Anthem and the Epilepsy Alliance Africa motivation song. Bernard Mbuya Onyango, Vice President for East Africa, delivered the opening address, emphasizing the importance of advocacy, innovation, and collaboration in addressing epilepsy across Africa and working towards global targets.

ILAE strategic priorities for Africa

Professor Alla Quekht, President of the International League Against Epilepsy, addressed the conference, highlighting the organization’s priorities for 2025-2029, including the 120th anniversary and alignment with the WHO’s IGAP implementation. She emphasized the importance of collaboration with Africa and outlined key strategic objectives, particularly focusing on prevention, care, and public health approaches to epilepsy in Africa. The discussion also covered available resources and tools, including global reports and toolkits, to support epilepsy care and IGAP implementation in the region.

Grassroots epilepsy advocacy in Africa

Vallent presented a case study on Geno Epilepsy Centre for Empowerment in Kenya and discussed the importance and roles of grassroots organizations in epilepsy advocacy across Africa. Key areas of grassroots advocacy include public awareness and stigma reduction, community education campaigns, media outreach, peer support groups, counseling, access to healthcare, and policy change. Challenges faced by these organizations include limited funding, lack of medical training, cultural resistance, and volunteer burnout. Successes have been achieved through free epilepsy medication programs, inclusion of epilepsy in national health strategies, and greater visibility in public discourse. Vallent concluded by urging support for grassroots organizations through volunteering, donations, education, amplifying local stories, and advocating for policy change in communities.

Vallent Adhiambo was recognized for her grassroots advocacy work and encouraged others to support similar organizations in their regions. The meeting then transitioned to welcoming members of the Executive Council of the Epilepsy Alliance Africa, including Vice Presidents from different African regions.

Epilepsy advocacy in rural communities

Jean Leon Habimana presented on epilepsy advocacy in rural communities focusing on Rwanda, highlighting challenges such as stigma and lack of access to treatment, and shared a success story of a student with epilepsy who was supported through telemedicine and went on to excel in her studies. He called for increased awareness, better access to medication, and investment in telemedicine to improve care in rural areas. Rugare summarized the presentations from the conference, including those by the EAA president, International League Against Epilepsy president, and others, and opened the floor for questions.

African neurology services: Challenges and solutions

The discussion focused on the availability and equipment of medical facilities, particularly neurology and mental health services, across African regions. Participants shared insights about the limited presence of neurologists and specialized medical schools in many African countries, with Rwanda and Zimbabwe providing specific examples of their current capabilities and challenges. The conversation highlighted efforts to address these gaps through telemedicine programs and highlighted the need for better equipment and training, particularly in rural areas where general practitioners often handle neurology cases without sufficient expertise.

Discussion

The meeting focused on epilepsy care in Africa and the upcoming Stripes Week. Participants discussed the need for boot camps across Africa to train healthcare professionals in epilepsy and neurology, with emphasis on genomic data research and specific drug treatments.

Stripes Week

Rugare provided instructions for Day 2 of the conference, which will feature four sessions, and announced that Stripes Week, running from Monday to Friday, aims to make epilepsy more visible globally with a theme of “From Voices to Action.”

The conference continues on the 18th with several speakers from and outside Africa.