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European Federation of Neurological Associations

EFNA

The European Federation of Neurological Associations [EFNA] is an umbrella group representing pan-European neurology patient groups.

Lobbying Activity

Response to EU’s next long-term budget (MFF) – EU funding for competitiveness

28 Oct 2025

On behalf of the members of the European Federation of Neurological Associations (EFNA), who represent millions of patients living with neurological disorders across Europe, we write to express our deep concern regarding the current structure of the European Unions health funding mechanisms. Specifically, we urge the European Commission to establish a ringfenced, standalone health budget that reflects the strategic importance of health to Europe's future. While we acknowledge the value of cross-sectoral collaborationparticularly between health and innovationwe are increasingly alarmed by the dilution of health priorities within broader funding frameworks such as Horizon Europe. When health is subsumed under innovation or other thematic umbrellas, it risks being deprioritised in favour of technological or economic objectives that may not align with the urgent needs of patients, healthcare systems, and public health. The Risks of Integrating Health into Broader Portfolios: Loss of Patient-Centric Focus: Innovation-driven agendas often prioritise market potential over patient need. This can marginalise chronic and complex conditionssuch as neurological disordersthat require sustained investment but may not yield immediate commercial returns. Fragmentation of Funding Streams: Health-related initiatives must compete with non-health projects for limited resources, leading to fragmented efforts and reduced impact across Member States. Reduced Accountability and Transparency: When health funding is embedded within other domains, it becomes more difficult to track, evaluate, and ensure equitable distribution of resources across disease areas and populations. Undermining Long-Term Health Strategy: Europes ageing population, rising burden of non-communicable diseases, and increasing mental health challenges demand a coherent, long-term health strategy. This cannot be achieved without dedicated, predictable funding. The Burden of Neurological Disease in Europe: More than half of the European population (approx. 60%) suffers from a neurological disorder and these disorders are among the leading causes of disability and death in Europe. Neurological conditions are responsible for over 20% of the total disease burden in Europe, measured in disability-adjusted life years (DALYs). Conditions such as stroke, dementia, epilepsy, migraine, and Parkinsons disease are increasing in prevalence, particularly among ageing populations. The number of known rare neurological conditions is also ever-increasing, and according to the European Reference Network for Rare Neurological Diseases (ERN-RND) 60% of those affected are still undiagnosed. The economic impact is staggering: neurological diseases cost European economies hundreds of billions of euros annually, including direct healthcare costs and lost productivity. Despite this, neurology receives disproportionately low research and policy attention compared to other major disease areas. A Standalone Health Budget: A Strategic Imperative: We believe that a ring-fenced health budget would: Ensure that health priorities are defined by public health needs, not market dynamics. Enable targeted investment in prevention, care, and research for high-burden conditions, including neurological diseases. Strengthen resilience of healthcare systems across Member States. Foster trust among citizens that their health is a central concern of the European project. Europes health challenges are not peripheralthey are foundational. The COVID-19 pandemic made this abundantly clear. Now is the time to act decisively and structurally. The signatories to this letter respectfully urge the European Commission to initiate a dialogue with civil society, patient organisations, and healthcare stakeholders to explore the creation of a standalone health budget in the next Multiannual Financial Framework. A competitive and resilient Europe cannot be achieved without a healthy Europe.
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Response to Gender Equality Strategy 2026-2030

8 Aug 2025

Neurological conditions significantly and disproportionately affect women across Europe, yet remain under-recognised in gender equality frameworks. EFNA, representing individuals affected by neurological conditions, strongly advocates that the new Gender Equality Strategy explicitly addresses brain health as a gender equality priority, aligning with the EUs principles of social justice, inclusion, and sustainable development goals. Women face unique neurological health burdens exacerbated by intersectional challenges. This includes gender bias, socioeconomic disadvantages, caregiving burdens, and limited access to specialist services. Disorders such as migraine, Alzheimer's disease, multiple sclerosis, Parkinsons disease, and restless legs syndrome (RLS) have higher prevalence and distinct impacts on women. For instance, migraines are three times more common in women and constitute the leading cause of disability among young women. Parkinson's disease shows higher mortality rates in women, coupled with greater disability and reduced quality of life. Despite the clear gender disparities, these conditions remain under-researched, often misdiagnosed, and ineffectively managed in women due to gender biases and stereotypes in healthcare delivery. The economic and societal implications are profound. Neurological conditions are the leading cause of disability-adjusted life years (DALYs) globally, and women bear a disproportionate share of this burden. Women are frequently primary informal caregivers for family members with neurological conditions, negatively impacting their own health, financial stability, and workforce participation. Across Europe, approximately two-thirds of informal care is provided by women, often leading to reduced working hours, increased risk of poverty, and adverse mental health outcomes. Addressing these caregiving burdens and improving access to specialised neurological care and support services for women should be an explicit aim of the new gender equality framework. The COVID-19 pandemic exacerbated these inequalities, disrupting essential neurological care services disproportionately accessed by women and amplifying existing challenges such as increased informal caregiving responsibilities and associated mental health impacts. EFNA urges the European Commission to incorporate brain health explicitly in its Gender Equality Strategy 2026-2030. Key recommended actions include: Acknowledge neurological conditions as critical women's health issues and integrate these explicitly into health, social, and economic policy initiatives. Encourage and support research that disaggregates data by sex and gender, ensuring women's adequate representation in clinical trials and neurological research, addressing significant current research gaps and gender biases. Develop targeted EU policies that support female informal caregivers, providing better financial protections, mental health resources, and workplace flexibility measures. Such actions will reduce gender employment gaps and ensure equitable economic participation. Adopt intersectional frameworks recognising compounded disadvantages faced by women with disabilities, migrants, and those experiencing socio-economic deprivation, who are disproportionately affected by neurological conditions and related caregiving burdens. Strengthen cross-sectoral collaboration between healthcare, social protection, and employment sectors to support women affected by neurological conditions holistically, reducing barriers to equitable participation in society and the economy. EFNA appreciates the EU's leadership in prioritising gender equality and strongly advocates for neurological health to be central to this strategy. Addressing neurological conditions as a gendered issue is vital for achieving true gender equity, inclusive health systems, and resilient, competitive societies.
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Meeting with Cynthia Ní Mhurchú (Member of the European Parliament)

2 Jul 2025 · Meeting EFNA

Meeting with Nina Carberry (Member of the European Parliament)

2 Jul 2025 · Health Policy

Meeting with Adam Jarubas (Member of the European Parliament, Committee chair)

24 Apr 2025 · Wyzwania chorób neurologicznych

Meeting with Ines Prainsack (Cabinet of Commissioner Stella Kyriakides), Panayiotis Pourgourides (Cabinet of Commissioner Stella Kyriakides) and

18 Nov 2020 · Exchange of views with EFNA, EAN and EBC on EU4Health, the impact of COVID-19 on mental and neurological health and their participation and contribution in the Health Policy Platform and other fora.

Meeting with Arunas Vinciunas (Cabinet of Commissioner Vytenis Andriukaitis) and Pain Alliance Europe

19 Feb 2015 · Range of brain related deseases