“We would like to create and deliver change and improvement to those living with a brain condition.” EBF Executive Director, Frédéric Destrebecq was invited to the podcast of Axiom Healthcare Strategies hosted by Anna Graca to speak about joining efforts of patient organizations, research and clinical networks, as well as drug innovators and policymakers to tackle challenges related to brain health.

It is estimated that around 30 million Europeans live with a rare condition and between 75% – 80% of those have neurological symptoms. Despite the significant progress that has been made to ensure that a patient-centered approach is implemented, there seems still to be fragmentation of research efforts, scarcity of expertise, a few disease-modifying therapies, or difficulty in accessing adequate care, which are currently the key challenges in the field.

Patient-centricity is key to every project that both EBF and European Brain Council (EBC) are doing, and it is of the highest relevance to addressing patients’ needs. The rare disease community has been calling for a European Action Plan on rare diseases, which is meant to be a coordinated and goal-oriented strategy. This will help reduce the fragmentation of the European market for pharmaceuticals, maintaining the status quo that is continuously failing people living with a rare disease.

It is important to keep patients and broader societal needs steadily as the guiding light. Europe has the capacity to combine a public health-driven agenda with a competitive research-based economy – it only needs a more strategic framework with shared goals in place to be efficient and accountable.

Listen to the full episodes on Spotify or Apple Podcasts!