EMEA News Q1 2026

EMEA at the European Patients’ Forum Congress 2025

EMEA Becomes New Member of EPF and Attends EPF Congress

Last year, EMEA became a member of the European Patients’ Forum (EPF) — a pan-European organisation representing the collective voice of patients across the continent. Joining EPF marked an important step in strengthening EMEA’s presence within European health advocacy, creating opportunities to influence policy, build partnerships, and ensure that the perspectives of people with myalgic encephalomyelitis (ME) are represented in European healthcare discussions.

When EMEA Executive Committee member Ona Albizu stepped into the European Patients’ Forum (EPF) Congress 2025 [1] in Brussels, she entered a space buzzing with energy, ideas, and determination. Over two days more than 200 participants - patient organisations, healthcare providers, policymakers, and researchers - gathered to tackle one shared challenge: building healthcare systems that are resilient, inclusive, and truly patient-centred.
For EMEA, this created an opportunity to bring the voice of people living with ME to the heart of European healthcare dialogue. The Congress, representing an estimated 150 million patients across EPF’s 82 member organisations, offered a rare chance to connect with decision-makers, share experiences, and lay the groundwork for meaningful collaboration.

About this article

As a new member of the European Patients’ Forum (EPF), EMEA joined patient leaders and policymakers at the EPF Congress 2025 in Brussels to strengthen collaboration across Europe. The Alliance advanced its mission to influence health policy, raise awareness of ME, and promote equitable, evidence-based care for all patients.

Patient Experience and Invisible Disabilities

When Erato Markantoni (Youth Group Member, EPF) asked, “How do we build systems that actually listen?”, she set the tone for the event. Discussions spanned pandemic preparedness, digital health, environmental sustainability, and healthcare delivery. Yet for EMEA, a critical gap was visible: ME/CFS and Long COVID were largely absent from debates on post-pandemic recovery, underscoring the continued marginalisation of Post-Acute Infection Syndromes in Europe.

EMEA actively engaged EU and WHO stakeholders to raise the need for European-approved clinical guidelines for ME/CFS and supportive therapies while definitive treatments remain unavailable. These exchanges framed ME as a structural health system challenge, rather than a niche concern, ensuring it was present in European health policy discussions.

Accessibility and patient experience emerged as central themes. For the first time, Congress organisers considered invisible disabilities, including chemical hypersensitivity and sensory sensitivities, asking participants to minimise triggers during sessions. For people living with ME/CFS, these realities can determine whether participation is possible.

EMEA highlighted the daily challenges patients face: delayed diagnosis, navigating care, and environments that do not accommodate fluctuating abilities. These insights are essential for shaping policies that genuinely improve lives.

EMEA also connected patient experience with wider health system discussions. Inaccurate clinical guidelines can lead to inappropriate prescribing, harming patients and generating unnecessary pharmaceutical waste, thereby linking patient care directly to the debate on sustainability in healthcare and health management.

Building Networks for Advocacy and Accessibility

Beyond observing, EMEA used the Congress to forge strategic connections that will advance ME/CFS diagnosis and treatment guidelines across Europe. Engaging with patient organisations, methodological experts, and policy stakeholders helps ensure guidelines are scientifically robust, patient-informed, and internationally credible. In parallel, EMEA deepened its engagement on disability rights. Prior to the Congress, Ona Albizu participated in the European Disability Forum (EDF) webinar “Judicial Tools to Enforce EU Disability Law” and arranged an in-person meeting with EDF’s Daniel Casas in Brussels, to discuss EDF’s work on legal cases [2] and their 2024 EU Enforcement Toolkit [3].

The discussion highlighted accessibility as a cross-cutting issue for people with ME/CFS, extending beyond clinical settings to healthcare, public spaces, administrative procedures, and daily environments free from sensory overload, fragrances, and chemical triggers. It also addressed rights to reasonable accommodations in education, employment, housing, and social services, as well as the need for effective judicial enforcement mechanisms. This integrated approach reinforces the importance of linking health advocacy with legal protections, opening avenues for future collaboration between EMEA and EDF, and strengthening rights-based, patient-centred frameworks across Europe.

Reflections and Next Steps

The EPF Congress reinforced the simple truth that change can happens when patients, experts, and policymakers come together - aligning with EMEA's policy of turning dialogue into action:

Ensuring ME/CFS guidelines are methodologically sound, evidence-based, and internationally credible
Advocating for timely diagnosis, equitable care, and accessible environments
Promoting policies that recognise sensory sensitivities and other invisible disabilities, supporting patient participation in health, education, and work

The Congress underscored EMEA’s long-standing vision to shape European health policy through collaboration and partnership. Guided by this approach, the Alliance is turning shared commitment into real influence — amplifying voices, reshaping policy, and driving progress across the continent.

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Last Update: January 2026