After a Phd in Philosophy and a first experience in a competitiveness-focus Brussels think tank, Matteo Scarabelli joined Eurordis - the European Organisation of rare disease patients - to be responsible for the involvement of patients in research and decision making for orphan drugs. For two years now, he has been working at the heart of the pharmaceutical industry’s efforts to prepare for the new European HTA setting and for its implementation into national pricing and reimbursement systems, as EFPIA Associate Director for Market Access.
Despite progress, 95% of rare diseases still lack effective treatments, highlighting the imperative for innovative partnerships. This panel will explore how to overcome regulatory, funding, and capacity barriers that hinder optimal ERN-industry collaborations. By bringing together voices from patient advocacy, clinical research, policy, and industry, we aim to forge a path towards a more collaborative and efficient rare disease research ecosystem in Europe.
Key topics include:
As we anticipate the Hungarian Presidency's focus on rare diseases and look ahead to the Polish and Danish Presidencies, this panel will generate actionable insights to inform policy recommendations. Our goal is to catalyze momentum for an EU Rare Disease Action Plan that embraces the power of ERN-industry collaborations.