Join Biogen for Rare Disease Day 2020 at the European Parliament
18 February 2020, Brussels

Every year, the end of February marks the Rare Disease Day. On this occasion, the international community comes together to raise awareness about rare diseases and their impact on people’s lives. 

To achieve this, this year Biogen has partnered with EURORDIS (Rare Disease Europe) to develop a full day initiative taking place at the European Parliament in Brussels on the 18th of February.  The event will bring together patient organisations, medical professionals, academia, industry and Members of the European Parliament and European Commission, to discuss the reality of living with rare diseases, the importance of early diagnosis and registries, Orphan Drug legislation and highlight achievements, opportunities and challenges in the field of rare diseases.

Events

12:30 - 13:30 (EU Parliament ASP5G)

Exhibition showcasing artwork created by patients living with Spinal Muscular Atrophy (SMA), including an opera performance of a singer living with Amyotrophic Lateral Sclerosis (ALS).

Speakers include:
Phil Herold (artist), MEP Tomislav Sokol, Noemie Desquiotz-Sunnen (opera singer), MEP Stelios Kympouropoulos, MEP Loucas Fourlas, Mencia de Lemus Belmonte (President of SMA Europe), Stella Kyriakides (EU Health and Food Safety Commissioner), Johanna Friedl – Naderer, President Biogen.

13:30 - 14:30 (VoxBox EU Parliament)

High-level recorded media debate on the importance of early diagnosis, newborn screening, disease registries and EU coordinated actions.

Speakers include:
MEP Stelios Kympouropoulos, MEP Tomislav Sokol, Dr. Josep Figueras (Director of European Observatory on Health Systems and Policies, WHO), Yann Le Cam (CEO EURORDIS), Prof. Janbernd Kirschner (Director Neuropediatric Department Bonn University Hospital), Johanna Friedl – Naderer, President Biogen.

15:00 - 17:00 (EU Parliament)

“Reframe Rare”: a policy event whereby relevant stakeholders, including MEPs and patients will discuss in a conversation format challenges and new opportunities for rare diseases in the upcoming years.

Register here to join the exhibition

How to get there

Rare Disease Day 2020 will be held
at the European Parliament in Brussels

Date of preparation: February 2020. Biogen-41600