EuropaBio Patient Bio-Forum | European Reference Networks: challenges, achievements and opportunities

EuropaBio, the European Association for Bioindustries, is proud to continue our platform for engaging patient and industry alike on pertinent healthcare debates: the Patient Bio-Forum. In this edition the focus will be on the impact of European Reference Networks (ERNs).

With an aim to facilitate discussion between patients and medical professionals across the EU, ERNs tackle rare disease head on. Creating a pooled, virtually accessible network of experts, ERNs demonstrate the power of collaboration in diagnosis complex and rare diseases. With the first ERNs having started in 2017, we anticipate a periodic evaluation during 2022/23. Similarly, this year the Commission have undertaken an evaluation of the Cross-border Healthcare Directive which establishes the legal basis of ERNs.

Against a backdrop of societal change, the EuropaBio Patient Bio-Forum convenes this October with a panel of experts representing patient, industry, EU and Member State perspectives on the challenges, achievements and opportunities the ERNs present.

AGENDA

Welcome and introduction (5 mins)

• Nicola Bedlington (Moderator)

Panel Discussion (45 mins)

• Ingunn Westerheim, President, OIFE – Osteogenesis Imperfecta Federation Europe;
• Dr. Birute Tumienė, clinical geneticist at the Centre for Medical Genetics and the Coordinator for Competence Centres in Vilnius University Hospital Santaros Klinikos, ERN Board Member on behald of Lithuania
• Dr. Jose A. Valverde, Policy Officer, Unit B.3 – European Reference Networks and Digital Health, DG SANTE, European Commission;
• Assoc. Prof. Dr Till Voigtländer, Department of Neuropathology and Neurochemistry University of Vienna, Eurordis Black Pearl Awardee 2019
• Dirk Vander Mijnsbrugge, Vice President Medical Affairs Lead Rare Diseases International Developed Markets, Pfizer

Biobreak/Slido Poll (5 mins)

Moderated Q&A (35 mins)

• From the audience, submitted via chat function.

Closing remarks