In the latest episode of the Brain Health Matters podcast, we explore the often-overlooked impact of neurological conditions on employment—not just for those living with these conditions, but also for their carers. From disrupted careers and workplace stigma to the emotional toll of balancing health and livelihood, we unpack the complex realities faced by millions across Europe.

This episode features a roundtable conversation with Elisabeth Kasilingam (Executive Director, European MS Platform), Hildur Önnudóttir (Advocacy and Campaigns Manager, Parkinson's Europe) and Elena Ruiz de la Torre (Executive Director, European Migraine and Headache Alliance (EMHA)), who discuss systemic challenges—like lack of accommodations, inflexible work environments, and inadequate social support—and share actionable insights on how employers, policymakers, and healthcare systems can do better.

You’ll also hear firsthand stories from people who have had to adapt, and sometimes sacrifice their professional aspirations, with audio diaries from Lori RennaLinton and Ben Hunt.

Finally, you'll hear from Silvia Carter, Community Leader at Carering - Roche's internal community for employees who are patients or caregivers.

Whether you're a patient, a carer, an employer, or simply curious about the intersection of brain health and work, this episode offers a compassionate and informative look at what it means to stay employed while managing a neurological condition.

Links to resources mentioned:

• MSatWork.LIFE
• MS in the Workplace: A Practical Toolkit for Employers
• Welcome in the Workplace: Parkinson’s and your rights at work
• Parkinson’s workplace rights
• Parkinson's Europe 'Welcome in the Workplace' webinar 23 October 2025
• The Migraine Friendly Workplace project
• ERN-RND Patient Journeys

The Brain Health Matters podcast is written and produced by Elizabeth Cunningham on behalf of the European Federation of Neurological Associations, with support in 2025 from Roche, Alexion, PTC Therapeutics, Merck, Boehringer Ingelheim and Lundbeck.

Welcome to Brain Health Matters, the podcast series from the European Federation of Neurological Associations, where we explore the issues that shape the lives of people living with neurological conditions across Europe.

In today’s episode, we’re diving into a topic that’s fundamental to improving outcomes and empowering patients: health literacy.

Health literacy is more than just understanding medical jargon—it’s about equipping individuals with the knowledge, skills, and confidence to make informed decisions about their health. For the neurology community, where conditions are often complex, chronic, and deeply personal, health literacy plays a critical role in everything from diagnosis and treatment to long-term care and quality of life.

Whether it's navigating a new diagnosis, understanding treatment options, or managing symptoms, patients and caregivers need clear, accessible information. And healthcare professionals need tools and strategies to communicate effectively.

In this episode, we’ll explore why health literacy matters, how it affects patient engagement and outcomes, and what we can do—as advocates, clinicians, and policymakers—to close the gap and build a more informed, empowered neurology community.

Guests include Kristine Sørensen, Founder of the Global Health Literacy Academy, Jagdeep Singh Aujla, Founder of the Dopamine Warriors boxing club and EFNA Community Advisory Board member, and Dr. Andra Ciucă, Genetic Counsellor and Clinical Psychologist at Babeș-Bolyai University, Romania.

Welcome to another episode of Brain Health Matters, brought to you by the European Federation of Neurological Associations. In this episode, we’re shining a light on something often overlooked but deeply impactful—the invisible symptoms and burdens faced by people living with neurological conditions.

While tremors, seizures, or mobility challenges might be more visible, many of the most debilitating aspects of these conditions remain hidden from view. Fatigue, cognitive fog, chronic pain, anxiety— these are just a few of the silent struggles that can profoundly affect quality of life, yet are frequently misunderstood or dismissed.

In this episode, we’ll hear from Dr. Oliver Bernath, a neurologist and sleep disorder specialist based in the UK, Tania Pilz, a young woman from Austria living with Multiple Sclerosis, and GraceMarie Bricalli, President of the European ME Alliance, who will share insights into the frequently-overlooked burden of Myalgic Encephalomyelitis (ME) and the urgent need for recognition and support.

Together, they'll help us uncover the emotional, psychological, and social toll of these invisible symptoms. We’ll explore why they’re so often under-recognized, how they impact daily life, and what can be done to ensure they’re taken seriously in both clinical care and public awareness.

Because when it comes to brain health, what we can’t see can hurt just as much as what we can.

The Brain Health Matters podcast is written and produced by Elizabeth Cunningham, on behalf of the European Federation of Neurological Associations, with support in 2025 from Roche, Merck, Alexion, PTC Therapeutics, Boehringer Ingelheim and Lundbeck.

In an ever-evolving world, technological advancements are revolutionising the way we approach healthcare. The integration of data analytics and artificial intelligence (AI) in health systems is set to transform the landscape of neurology, offering new possibilities for diagnosis, treatment, and patient care. In this episode of the Brain Health Matters podcast we’ll take a closer look at how these innovations are poised to impact the neurology community and pave the way for a brighter future for individuals with neurological conditions.

We’ll also hear about significant progress in the prioritisation of brain health and neurology in global policy developments in recent years, and how this is gaining momentum, in what has been termed the ‘neurological revolution’.

In recent years, there has been growing recognition of the crucial role that patient organisations play in driving advancements in medical research and healthcare. In the latest episode of the Brain Health Matters podcast we’ll look at why this is especially true in the field of neurology, where patients and their families face complex and often devastating conditions that require innovative approaches to treatment and care.

This episode features an interview with Dr. Cristina Mueller, Scientific Officer at ERA-Net Neuron, and Henk Lindeman, experienced patient reviewer and member of EFNA's Community Advisory Board, who discuss the benefits of involving patients in the reviewing process for research funding applications.
We'll hear from Lorraine Duffy, another member of EFNA's Community Advisory Board, who being both a person living with acquired brain injury and a researcher is uniquely placed to explain what good Patient and Public Involvement looks like.
Tadeusz Hawrot is founder and Executive Director of PAREA – the Psychedelic Access and Research European Alliance. Tadeusz joins us to speak about a project in which both groups are partners – the Psypal Project.
Finally, we have an uplifting conversation with Dr Dirk Schubert, Associate Professor Translational Neuroscience at Donders Institute for Brain, Cognition and Behaviour, who reports on increasing patient interaction with neuroscience and medical students.

The Brain Health Matters podcast is written and produced by Elizabeth Cunningham, on behalf of the European Federation of Neurological Associations, with support in 2024 from Roche, Alexion and Merck.

Did you know that there are over 400 different neurological conditions? The vast majority of these conditions are extremely rare, making them difficult to diagnose and treat. From a lack of available specialists, to fragmented care pathways, there are too many gaps in healthcare systems for people living with a rare neurological disease to fall through.

In this episode of Brain Health Matters, we’ll hear from three people across Europe living with different rare neurological conditions. We’ll also hear from Astri Arnesen, President here at the European Federation of Neurological Associations (EFNA), who will tell us what organisations like EFNA, along with policy-makers, are doing to counter the challenges faced by the rare disease community.

Neurological conditions are extremely common, with at least 1 in 3 of us affected in our lifetime. In this episode we’ll hear from people whose lives were turned upside down by the onset of symptoms and hear how they have coped since their diagnosis.

This episode features Gary Boyle, who lives with Young Onset Parkinson's Disease, Nadia Malliou, who lives with chronic pain and absence seizures, and Joke Jaarsma, who is affected by Restless Legs Sydrome. We'll also hear from Dr Orla Galvin, Executive Director at the European Federation of Neurological Associations (EFNA) and from two of our sponsors- Dimitrios Georgiopoulos, Head of Neurology & Immunology at Merck and Stephanie Ludwig, Global Patient Partnership Leader- Neuroscience at Roche.