World Health Day
7 April marks World Health Day. For EMEA this day would need to be more than symbolism, reflecting the challenges facing those living with Myalgic Encephalomyelitis (ME). It should serve as a reminder that we need evidence-based action, measurable progress, and real-world change.
Too often, the conversation surrounding ME stops at “raising awareness.”
While visibility is important,
awareness alone does not improve clinical services, change policy, secure funding, or deliver better patient
outcomes.
For the EMEA, World Health Day is about moving beyond a "feel-good" echo chamber and asking others to do more,
and instead towards concrete engagement and measurable results.
EMEA is actively contributing to the frameworks that shape innovation and policy within public health systems. Following our work as an accredited WHO partner - including our participation in regional conferences and the issuing of influential statements - we are pleased to announce a significant development.
About this article
ON World Health Day 2026 this article announces the European ME Alliance’s selection for the WHO/Europe Public Health Innovation Platform, focusing on policy, governance, and financing. This new role provides a formal seat in decision-making processes to ensure myalgic encephalomyelitis (ME) is integrated into health systems and future funding models across Europe.
EMEA Selected for WHO/Europe Public Health Innovation Platform
EMEA has been selected as a participant in the WHO/Europe Public Health Innovation Platform, within the “Policy, Governance & Financing” thematic group.
This is not a symbolic appointment. It provides EMEA with a formal seat at a WHO-hosted table where system-level decisions regarding the funding and governance of health innovation in Europe are made.
Our role is to share expertise and contribute to the identification of innovations that address regional public health needs, ensuring that the discussion is grounded in what works in practice rather than what merely sounds promising on paper.
Strategic Objectives and Practical Outputs Through this platform, EMEA will bring ME-related evidence directly into high-level policy discussions. This involvement allows us to:
- Influence Design: Ensure ME is considered when countries design innovation policies and funding models.
- Align Efforts: Gain early insight into the types of innovations Member States are likely to back, allowing us to align our work with the future direction of WHO policy.
- Expand Networks: Build connections across a cross-section of stakeholders, including government agencies, research institutes, and public health bodies, providing greater visibility for the ME community.
Influencing Health Improvements
The thematic working groups within this platform are designed to produce functional outputs, such as evidence briefs, technical summaries, and regulatory insights. These tools help Member States make informed decisions about scaling effective health solutions.
For a condition that has historically been sidelined in policy discussions, this opportunity to influence policy, governance, and financing is vital. It creates a pathway for practical change in how services are commissioned and how innovations are assessed.
For our community, progress requires engagement with the mechanics of healthcare—evidence, financing, and service delivery—rather than just rhetoric.
This World Health Day, EMEA remains focused on the technical and collaborative work necessary to turn the ideals of dignity, health, and inclusion into a reality for everyone living with ME.
Further Information
- EMEA Becomes New Member of EPF at EPF Congress
- EMEA Questions to the European Commission Parliament
- EMEA Calls for the Inclusion of ME in the Implementation of the Political Declaration of the 4th UN High-Level Meeting on Noncommunicable Diseases
- A Human and Economic Crisis that Europe Can No Longer Ignore
- EMEA 2024 Pan-European ME Survey Report
- WHO ICD-11: ME (8E49) – Official neurological disease classification
- EMEA EU Policy Brief 2026 – ESF+/Horizon Europe advocacy proposals
EMEA
The European ME Alliance (EMEA) is a network of national patient organisations and charities united in its objective: to improve the lives of people with ME across Europe.
We advocate for:
- Human rights for all patients - especially those most severely ill
- Evidence-based care grounded in science
- Ending stigma, delays, and harmful treatments
- Funding biomedical research needed for real progress
- Making sure no patient is left behind - no matter how invisible
Establishing Human Rights: Research, Recognition, Awareness
Through consistent advocacy and strategic action, the European ME Alliance attempts to make tangible improvements:
- Inclusion in EU Disability Frameworks: EMEA advocates for the explicit recognition of ME in EU Disability Strategy implementation and funding programmes such as ESF+, ensuring people with ME access social protection and support equitably.
- Efficient Use of Existing Infrastructure: Instead of calling for costly new structures, EMEA pushes for optimising current healthcare, research, and educational systems. This includes supporting biomedical research coordination through European networks like the European ME Research Group (EMERG) and Centres of Excellence, and promoting inclusion in Horizon Europe and EU4Health projects.
- Standardised Diagnosis and Data: EMEA calls for mandatory standardised coding of ME diagnoses (using ICD-11 codes) across European health systems to enhance epidemiology, policy-making, and patient care pathways.
- Capacity-Building for Healthcare Providers: EMEA champions accessible, digital training modules and awareness campaigns targeting front line medical personnel, deployed through existing EU platforms to ensure wider reach without additional costs.
- Active Participation in Disability Rights Events: As highlighted in its recent participation in the European Disability Forum (EDF) Annual Meeting and events surrounding the European Day of Persons with Disabilities (4-5 December 2026), EMEA works alongside key stakeholders to mainstream ME within broader disability rights agendas.
We initiated and support European networks for researchers and clinicians (European ME Research Group) and for young/early career researchers (Young EMERG) to kickstart collaborative European research in the absence of official support. In addition, we have partnered with the European Federation of Neurological Associations (EFNA), the European Disability Forum (EDF), and the European Patients’ Forum (EPF).
EMEA holds non-state actor status with the World Health Organization Regional Office for Europe, allowing it to participate officially in WHO regional meetings and advocate for ME at the European public health level. We are working to ensure ME gets the recognition and resources it desperately needs across the EU.