ALPE representation at the European Parliament in the ERN BOND meeting

On the 28th February 2018, the Rare Diseases Day

the European Reference Network for Rare Bone Disorders, ERN BOND, will hold a meeting at the European Parliament, to present the White Paper on diagnosis. Our Scientific Adviser, Inês Alves, member of the BOND Executive Board and who represents patients and patient organizations across Europe working for Rare Diseases of the Bone, will participate in the session "An ERN-BOND White Paper on Diagnosis", with Luca Sangiorgi, Coordinator of the ERN-BOND network, Istituto Ortopedico Rizzoli, Italy and Meena Balasubramanian and Valérie Cormier-Daire, coordinators of Working Group 1, WG1, "Challenge in diagnosis".

There will also be a panel on "How to face the challenges of early diagnosis of rare diseases" will the participation of Maurizio Scarpa, chair of the ERN Coordinators Group, Yann Le Cam, CEO, EURORDIS - Rare Diseases Europe and Martin Seychell, General of the Directorate-General for Health and Food Safety (DG SANTE), European Commission

This is another relevant moment for Fundación ALPE with representation and work at the European level. 

 

Here you can see the full Agenda