The EFNA Conference 2026 in Dublin marked a special occasion as the European Federation of Neurological Associations celebrated its 25th anniversary. The conference brought together an impressive mix of patient organisations, healthcare professionals, researchers, industry representatives and policymakers – all with a shared ambition to improve the lives of people living with neurological conditions.
A strong message throughout the conference was that patients and patient organisations must be involved from the very beginning. Support should not start years after diagnosis or once a treatment pathway has already been established. Newly diagnosed patients need access to reliable information, peer support and patient organisations early, helping them understand their condition, navigate the healthcare system and make informed choices.
Access to treatment remains a major challenge
Across many neurological conditions, the same problems were repeated: long waiting lists, unequal access to specialists, geographical differences in treatment – often described as a “postcode lottery” – and difficulties accessing new and innovative therapies.
The personal story of a migraine patient expert illustrated the impact clearly. After living with severe migraine from childhood and experiencing years when normal daily life, education and work were extremely difficult, access to a newer targeted treatment dramatically reduced her migraine days and gave her the possibility of living and working more normally again. However, access to such treatment remains limited, and in Ireland patients can face waiting times of two to three years for specialist migraine services.
The wider message was clear: access to the right treatment is not simply a healthcare issue. It affects education, employment, family life, social participation and quality of life.
Patient organisations are essential partners
Collaboration was one of the strongest themes of the conference. Patient organisations, clinicians, researchers, pharmaceutical companies and policymakers must work together – while maintaining transparency and managing potential conflicts of interest.
Industry representatives emphasised the value of patient organisations in providing real-world knowledge. Research and treatment development cannot focus only on a disease or a dataset; they must look at the whole person and what matters in everyday life.
For rare diseases in particular, patient voices can easily be lost because of smaller patient populations. Umbrella organisations therefore play an important role in ensuring that these voices are included in research, clinical development and policy discussions.
The message to everyone involved was simple: patients should be partners, not a box to tick.
MEP Billy Kelleher (Ireland, Renew Europe)
From patient stories to political influence
EFNA highlighted the importance of building political influence at both national and European level. Through its MEP Interest Group on Brain Health and Neurological Conditions, EFNA works to ensure that neurological health remains visible within the European Parliament.
Patient stories are powerful, but policymakers also need evidence, facts and data. Patient advocacy therefore needs both: the human story that demonstrates the real-life impact of disease, and robust data that supports the case for change.
As one speaker put it, data is not an end in itself – it is a catalyst for change.
Workforce, diagnosis and education
A recurring concern was the shortage of neurologists, specialist nurses and other healthcare professionals. Earlier and more accurate diagnosis requires not only better technology but also investment in workforce, education and specialist training.
The conference highlighted the consequences of delayed and incorrect diagnoses, particularly in rare neurological conditions. Specialist neurological nursing was presented as an important part of improving continuity of care for people living with chronic conditions.
The discussions also stressed the importance of educating workplaces, schools, families and the wider public. Stigma remains a major burden for people living with conditions such as migraine, Dystonia, epilepsy, Parkinson’s disease, MS and other visible and invisible neurological disorders.
AI and neurotechnology – opportunities and responsibilities
AI and neurotechnology were another important focus. New technologies can help patients understand their own health data, monitor symptoms and participate more actively in decisions about their care.
However, innovation must come with responsibility. Questions around data protection, long-term support, evidence and ownership must be addressed. One example demonstrated the risks when a patient depends on an implanted technology but the company behind the device later disappears.
Technology must therefore be designed around long-term patient needs – not simply around innovation itself.
The overall message: Work together and act now
Despite the many different neurological conditions represented in Dublin, the challenges were strikingly similar: delayed diagnosis, limited access to treatment, stigma, workforce shortages, inequality and a need for stronger patient involvement.
The conference repeatedly returned to the same solution: collaboration.
Patients, patient organisations, healthcare professionals, researchers, industry and policymakers must move beyond working in separate silos. The knowledge, technology and strategies already exist in many areas. The challenge now is implementation.
The momentum is there. The next step is to turn access into action – ensuring that every person living with a neurological condition has the opportunity not merely to live with their condition, but to live a full life.
