Date: April 8 th 2024
Location: Vieux Bois, Avenue de la Paix, Geneva, Switzerland
OneNeurology seeks to unify and empower neurology-related groups to promote collaboration in advocacy, action, and accountability for the prevention, treatment, and management of neurological disorders globally. By focusing on advocacy, capacity-building, and raising awareness, the initiative aims to highlight the commonalities among neurological disorders and the benefits to the community and society of addressing them collectively, alongside disease-specific advocacy efforts.
With this goal in mind, OneNeurology Partners gathered at the meeting to discuss and share information about their activities and progress.
At the opening of the meeting, Dr. Tarun Dua from the World Health Organization (WHO) addressed the attendees, emphasising the significance of the OneNeurology initiative and the meeting itself. Dr.Dua then opened the floor for presentations.
The first session, titled “The IGAP Lens,” provided an update and overview of the WHO Global Neurology Status. Additionally, the session included a report on the activities of the NCD Alliance and outlined the global milestones leading up to the United Nations High-Level Meeting (UN HLM) in 2025.
Dr. Neerja Chowdhary from WHO presented “The IGAP Implementation Toolkit: Actioning the Action Plan.” With the IGAP project’s second year (The Intersectoral Global Action Plan on Epilepsy and Other Neurological Disorders), adopted in May 2022 with a 10-year horizon, the toolkit translates high-level IGAP strategies into practical steps. It aids country-level stakeholders in achieving IGAP targets and customizing actions to their national context.
Designed for Ministries of Health, the toolkit assists in planning and decision-making for neurological disorders. Users include national and subnational implementers, policymakers, program managers across sectors (e.g., social care, education, labor), healthcare managers, service planners, and educators.
OneNeurology partnership members act as facilitators. Support from key stakeholders, including academia, professional societies, civil society, organizations of people with lived experience, and the donor community, is crucial. These stakeholders support actions, provide expertise, advocate, raise awareness, and participate in monitoring and evaluation.
Dr. Chowdhary highlighted the toolkit’s principles, focusing on customizability, stakeholder engagement, and the inclusion of voices of people with lived experience. The toolkit includes resources, tools, case scenarios, best practices, and criteria applied during development. Feedback from over 100 people led to iterative improvements. The next steps are piloting, dissemination, and implementation.
Following his colleague, Dr. Sebastian F. Winter from WHO presented “The Global Status Report on Neurology: Setting a Baseline for Progress on IGAP.” He noted that 43% of the global population experiences nervous system health loss, with 443 million DALYs being the leading burden.
The Global Status Report on Neurology aims to establish a baseline for IGAP targets, tailor key actions, and assess country progress. It targets policymakers and stakeholders in the public health response to neurological disorders, using country survey data and other sources like Global Burden of Disease (GBD) data. Baseline data collection began in October 2023.
Dr. Winter explained the IGAP questionnaire methodology, developed through consultations with Member States, WHO Regional Offices, and external experts. National IGAP baseline data has been collected across WHO’s six regions since October 2023, undergoing multiple review rounds. He presented the IGAP Global Status Monitoring Questionnaire and Indicators, focusing on governance, diagnosis, treatment, care, promotion, prevention, research, and public health approaches to epilepsy.
The provisional GSR structure includes recommended actions and best practices of “IGAP in Action.” Key milestones for the GSR include chapter and case study finalisation in August 2024, draft review in September/October 2024, and production and launch in December 2024.
Representing the NCD Alliance founded by founded by the International Diabetes Federation (IDF), World Heart Federation (WHF), the Union for International Cancer Control (UICC) and the International Union Against TB and Lung Disease (The Union), Alison Cox, Policy and advocacy director, presented “Road to 2025: NCD Alliance Activity and Global Milestones Ahead of the 4th UN High-Level Meeting on NCDs (HLM4).” She stated that the 2025 meeting will reflect on the annual 15 million premature deaths from NCDs since 2015, projected to exceed 150 million by 2025. The meeting aims to adopt a new political declaration on NCDs, grounded in human rights, to accelerate the global response and achieve the Sustainable Development Goals by 2030.
The final draft of the HLM4 Political Declaration is expected between May and August 2025. Cox discussed the UN Secretary-General Report 2024, prepared by the WHO Director-General, with consultations running from April to September 2024. The 2024 Report will follow previous formats.
She highlighted the key messaging for the 4th High-Level Meeting on NCDs: the Problem Statement as the Unacceptable Health Equity Gap, Advocacy Priorities on Accelerated Action, and the Campaign Theme on Leadership. She emphasised evidence-based solutions for NCDs to create a fairer, healthier world.
Cox outlined plans to accelerate global NCD actions, integrating policy and advocacy with mobilisation campaigns. The focus includes global advocacy and leadership with the theme “The time to lead is now,” featuring the Global Week for Actions on NCDs (October 15-22, 2024) and the 4th Global NCD Alliance Forum in Rwanda.
Advocacy calls for the 4th High-Level Meeting include accelerating implementation, breaking down siloes, mobilizing investment, delivering accountability, and engaging communities, aligning with IGAP’s strategic goals. Cox discussed NCDA’s input, including policy briefings and stakeholder engagement. She also addressed consultations ahead of the 2nd Global Financing Dialogue and the NCD Alliance’s inputs and highlighted side events at WHA77 and the 79th UN General Assembly session.
Wrapping up, she highlighted key campaign dates: October 15-22, Global Week for Action on NCDs, and the 4th Global NCD Alliance Forum from October 20-22, leading to the Kigali Declaration. Future leadership will focus on Inspiring Leaders, Mobilizing Sustainable Financing, and Powering Up Communities.
The second session of the meeting focused on the Best Practices in IGAP implementation Collection of cases studies and initiatives by the OneNeurology Partners.
Frédéric Destrebec, the Executive Director of the European Brain Council spoke about the EBC toolkit, global outreach and collaborations highlighting also the Brain Innovation Days that will take place on 13 and 14 November in Brussels.
In her presentation, “Scientific Update on the Strategic Drivers for Timely Achievement of the IGAP through the Sex and Gender Lens,” Dr. Laura Castro introduced the Women’s Brain Project. Founded in 2017 and based in Switzerland, the organization comprises experts in medicine, neuroscience, psychology, pharmacy, policy, and communications. They collaborate with patients, relatives, healthcare professionals, policymakers, and other stakeholders. The organisation transitioned to a foundation on March 24, 2024.
Dr. Laura Castro presented an IGAP update and Women’s Brain Foundation (WBF) deliverables, including three manuscripts on health economics – Enhancing care in Parkinson’s disease: sex and gender informed policy as a gateway to precision medicine and care (peer-review publication), The economic case for addressing sex and gender differences in Dementia (peer-review publication), and The economic case for addressing sex and gender differences in Multiple Sclerosis (peer-review publication). She emphasised raising policy prioritisation, strengthening governance, providing responsive diagnosis, treatment, and care, fostering research and innovation, strengthening information systems, and implementing promotion and prevention strategies.
Proposed actions for partners include advocating for increased visibility of neurological disorders in Sustainable Development Goals and other commitments, and prioritising these disorders in policy agendas. This involves raising awareness of the social and economic impacts of neurological disorders and the need for an integrated healthcare response. Opportunities for involvement include joining the Scientific Advisory Board or becoming Scientific Sponsors, Partners, or Ambassadors.
Following the presentation, Dr. Cristina Tassorelli from International Headache Society addressed global practice recommendations for migraine treatment.
In her presentation, she explained that migraine is a chronic, debilitating neurological disease and the leading cause of disruption of daily life in children, and the second in people aged 1549 years. She emphasised that migraine can be significantly improved with drugs, citing examples of treatments for acute attacks and prevention, as listed on WHO’s model list of essential medicines.
She discussed the global distribution and availability of these treatments as of December 2023. The proposed solution is to develop clinical practice recommendations for acute and preventive migraine treatments based on systematic reviews, meta-analyses, evidence-based treatment guides, and expert consensus. This would result in an IHS document for global use by stakeholders to reduce health disparities. She underlined that clinical practice recommendations were different from clinical guidelines.
Dr. Cristina Tassorelli introduced the team working on the project, highlighting the desired outputs and distinguishing between optimal and essential outcomes. Ideally, two sets of practice recommendations would be created for high and low resource setting s, derived from evidence-based content in recent guidelines, designed for use by clinicians, nurses, and community health workers.
The recommendations would address acute and preventive treatments separately. The presentation concluded with IHS’s ambition to improve and harmonize migraine care globally. She suggested this approach could be adapted to other areas of neurology through a threestep process: releasing two-level practice recommendations by neurological scientific societies, adopting the essential level in all countries, and leveraging the optimal level to enhance care quality. She ended with an invitation to the IHS confere nce in May in Berlin.
Dr. Olivia Begasse de Dhaem from GPAC – Global Patient Advocacy Coalition presented the project “Migraine Fitness at Work: Case Study at an Information Technology Company in Japan,” the largest headache education and management program in the workplace to date. The Fujitsu Headache Project aims to educate employees and executives on headache disorders to increase understanding, reduce stigma, and improve health and productivity. Stigma towards migraine is pervasive, with only 22% of employers considering it serious enough to justify work absence.
Additionally, many believe migraine is used as an excuse, and over half of workers do not disclose headache as a reason for absences due to stigma. The project significantly reduced stigma, with 83% of participants without headaches changing their attitudes towards colleagues with headache disorders.
Dr. Olivia Begasse de Dhaem presented key figures from the “Migraine Fitness at Work” project, noting high participation with 73,432 (91%) employees in Japan. The project revealed a 17% migraine prevalence, with 70% experiencing headaches and 5% moderate-to-severe headaches. E-learning was found very useful by 91% of participants. As a result, 83% of those without headaches changed their attitudes towards colleagues with headache disorders, and 4% (2,971 employees) sought consultations through the program. Productivity increased, yielding a 32-fold return on investment.
In summary, Dr. Begasse de Dhaem concluded that migraine is prevalent, disabling, and significantly impacts socioeconomic factors. The workplace headache education and management program effectively reduced stigma, improved diagnosis and management, and increased productivity, marking the project as a success.
In her presentation, Donna Walsh, CEO of IBE – International Bureau for Epilepsy, discussed global progress in epilepsy. She outlined the primary goals: positioning epilepsy as a global public health priority, empowering and amplifying the voice of people with epilepsy, and supporting IBE chapters and committees worldwide.
Walsh defined transformational social change for people with epilepsy as addressing needs beyond seizures, identified through advocates, organizations, and individuals. She emphasized the importance of knowledge creation and exchange, highlighting the IBE Global Epilepsy Needs Study (IBE GENS) project where the need to understand diverse communities through intersectoral, interdisciplinary, intergenerational, and intercommunity approaches is used when mapping out literature and understanding all perspectives through convening the GENS Expert Advisory Group.
She introduced the 15 GENS countries and presented the Project Timeline for 2024, which will proceed in three phases: study set-up until May 2024, data collection by August 2024, and analysis and reporting in October/November 2024. When discussing advocacy and awareness-raising, Donna Walsh highlighted the initiative “International Epilepsy Day/50 Million Steps.” She explained that it aligns with IGAP and announced the 2024 theme, “Share Your Epilepsy Journey,” complemented by the #50millionsteps campaign.
In conclusion, Donna Walsh presented IBE Publications from 2022-24 and the 2024 Regional Policy Advocacy Plans. She emphasized the importance of capacity building through the IBE Involve initiative, which includes regional committees connecting and sharing best practices, a community council aimed at equipping and empowering, and the IBE Youth Programme for raising awareness and recognition, culminating in the IBE Knowledge HUB. Finally, she highlighted the importance of partnership development through OneNeurology and its partners.
Representing the World Sleep Society, Prof. Dr. Karen Spruyt delivered a comprehensive presentation on her findings in sleep research, entitled “OneBrain – Day and Night.” She emphasized the critical importance of sleep and the need to prioritise it, particularly highlighting its vital role in child development. Dr. Spruyt elaborated on how sleep facilitates the recycling of old cells, the maintenance of bodily functions, and the replenishment of energy levels. Furthermore, she underscored the significant impact of sleep on memory consolidation, learning, and the clearance of metabolic byproducts from the brain.
Dr. Spruyt also discussed the bidirectional relationship between sleep and brain health, noting that sleep supports brain function and, conversely, brain health enhances sleep quality. Additionally, she pointed out the interplay between sleep and immune health.
The presentation included an analysis of the anatomy of sleep, covering the biological components and various stages of sleep. Dr. Spruyt highlighted the risks associated with insufficient or disrupted sleep, such as insomnia, sleep-related breathing disorders, restless legs syndrome, REM sleep behavior disorder, and narcolepsy, emphasizing that sleep issues are not uncommon even in rare diseases.
In conclusion, Dr. Spruyt stressed that sleep disturbances are predictive of a poorer quality of life. She also noted that the use of sleep medications is associated with an increased risk of dementia. The session concluded with ten tips for better sleep, as recommended by the World Sleep Society.
Prof. Coriene Catsman-Berrevoets from European Paediatric Neurology Society presented EPNS-IGAP roadmap starting with data from “WHO 2023: Global report on children with developmental disabilities. From the margins to the mainstream.” showing that neurological conditions in children / youth are not rare. Continuing with presentation it was shown that neurological conditions in children significantly impact the transition to adult care, as many adult neurological disorders, like Multiple Sclerosis and sleep disorders, originate in childhood. Advances in genetics reveal that many childhood developmental, metabolic, and neurodegenerative disorders present an age-dependent spectrum of symptoms, often milder in adults. As treatment options for childhood neurological conditions improve, more children with neurological and developmental disorders are surviving into adulthood, necessitating ongoing care for residual impairments.
Prof. Catsman-Berrevoets then presented the roadmap that started with data gathering by a survey sent to the members of the EPNS- Committee of National advisors in January 2024. The following steps are to develop EPNS framework based on the 5 strategic IGAP objectives, then raising awareness regarding the implementation and would be finalised with support and collaboration between IGAP representatives and other societies. The survey was sent to each Committee of National Training Advisers member – it was disseminated in 44 countries with 41 replies received. The presentation included some interesting results received with around National Brain Plan. Regarding the framework, the EPNS vision is to ensure IGAP is implemented in each European country with the voice of child neurology heard. To raise awareness, an online meeting was held on 14 March 2024 on launching EPNS- IGAP roadmap with 41 EPNS – OneNeurology representatives of PN Societies from 41 WHO European countries invited with the ongoing activities on support and collaboration.
The presentation was concluded with some of the activities that already started like learning about IGAP that involved sharing various tools with EPNS-IGAP representatives, including EFNA modules, key WHO and Lancet Global Health articles, and a formal letter outlining their roles. Efforts to raise awareness among EPNS members were made through the EPNS webpage, social media, newsletters, and ongoing collaboration with regular meetings and outreach to pediatric neurology stakeholders. Advocacy initiatives included Prof. Anna Jansen presenting at the ICNA congress and EPNS Board members attending several high-profile meetings to promote Brain Health across the lifespan.
Though not attending in person, Dr. Matilde Leonardi shared a presentation on Italian Brain Health Strategy that is included in the presentations overview together with this report.
During Session 3, “OneNeurology Partnership: A look to the Future Brain Health, Brain Wealth Discussion on scale up activities that resonate with the IGAP, SDGs, NCDs and the future of OneNeurology” partners reflected on all presentations and discussed scaling up initiatives in alignment with IGAP and integrating neurological health into broader public health agendas.
They examined ways to align activities with the SDGs and NCDs, exploring the long-term vision for OneNeurology with a focus on brain health and its socioeconomic impact. Enhancing collaborations with stakeholders, developing effective advocacy strategies, and promoting research and innovation were key points of discussion. Mental health was also a topic of interest where industry representative from Roche Stephanie Ludwig introduced a short meditation and breathing exercise.
The importance of engaging communities affected by neurological disorders and raising awareness to reduce stigma was emphasized. Participants also considered establishing metrics for monitoring progress and evaluating the impact of these initiatives on global neurological health outcomes.
The group discussed the ingredients of successful brain health advocacy. These were agreed as defining the ask(s), which includes determining what is wanted, from whom, and by when. Additionally, building partnerships and working collaboratively is crucial, moving from competition to collaboration and from fragmentation to true complementarity. Generating good data, such as the Global Burden of Disease (GBD), socio-economic analysis, and best practice case-studies, is essential. Disseminating data in an understandable, accessible, and convincing way through meetings, campaigns, policy briefs, and infographics is also important. Creating advocates, ambassadors, and alliances for neurology and brain health, centralising those with lived experience, and monitoring and evaluating/reporting on impact were highlighted as key elements.
For OneNeurology, its role could be in global awareness-raising, collation of best practice interventions (including the setting up of a sharepoint), dissemination of data via case study reports, socio-economic analysis, policy briefs, meetings/events, etc., and identifying and building the capacity of ambassadors and advocates for neurology, including high-profile individuals. Additionally, partnership mapping and engagement are important roles.
It was agreed that the Partnership should consider the above points before agreeing on an achievable workplan during the second half of 2024 and the first half of 2025, in the lead up to the World Health Assembly when IGAP will be back on the agenda. Regular meetings should be scheduled well in advance to allow active participation of all partners, and guest speakers could be invited to discuss topics of interest in wider, but related, spheres, such as NCDs, gender, disability, or from specific disease areas where similar work is underway.
List of Attendees
| Name | Organisation | |
| 1. | Olivia Begasse de Dhaem | GPAC – Global Patient Advocacy Coalition |
| 2. | Laura Castro | WBF Women’s Brain Foundation |
| 3. | Coriene Catsman-Berrevoets | EPNS – European Paediatric Neurology Society |
| 4. | Neerja Chowdhary | WHO – World Health Organization |
| 5. | Alison Cox | NCD Alliance |
| 6. | Audrey Craven | GPAC – Global Patient Advocacy Coalition |
| 7. | Frédéric Destrebec | EBC – European Brain Council |
| 8. | Tarun Dua | WHO – World Health Organization |
| 9. | Iva Galovic | EFNA – European Federation of Neurological Associations |
| 10. | Orla Galvin | EFNA – European Federation of Neurological Associations |
| 11. | Tadeusz Hawrot | EFNA – European Federation of Neurological Associations |
| 12. | Joanna Laurson-Doube | NCD Alliance |
| 13. | Stephanie Ludwig | Roche |
| 14. | Prof. David Oliver | International Neuro-Palliative Care Society |
| 15. | Dr. Antonella Santuccione Chadha | WBF Women’s Brain Foundation |
| 16. | Vinny Smith | Meningitis Research Foundation |
| 17. | Professor Karen Spruyt | World Sleep Society |
| 18. | Cristina Tassorelli | IHS – International Headache Society |
| 19. | Donna Walsh | IBE – International Bureau for Epilepsy |
| 20. | Sebastian F. Winter | WHO – World Health Organization |
