People living with SMA, ALS and other rare disease was the focus of the Rare Disease event at the EU Parliament on 18 February. The event was organised by Biogen in collaboration with EURORDIS, the patient organisation for rare diseases, hosted by the Members of the European Parliament Tomislav Sokol, Stelios Kympouropoulos and Loucas Fourlas and Stella Kyriakides, EU Health and Food Safety Commissioner, spoke at the event.
Bringing together patient organisations, medical professionals, European institutions representatives and industry, the event provided a unique opportunity to partner with the rare disease community to discuss the importance of centralised and standardised registries for collecting real world evidence, early diagnosis and maintaining current orphan drug regulatory framework.
Highlights of the event included the opening of “Bigger than Life,” an exhibition of work by Phil Herold, an internationally recognised artist living with SMA, and a performance by Noemie Sunnen, an opera singer living with ALS. These talented creative professionals helped us raise awareness about rare diseases.