Between 27 and 36 million Europeans experience living with a rare
disease. Every Rare Disease Day – taking place on 28 February –
puts the spotlight back on the complexities surrounding people living with rare
diseases. This year’s Rare Disease Day comes at a crucial time, weeks
before we expect the publication of the pharmaceutical package which will revise
the General Pharmaceutical Legislation, Paediatric, and OMP Regulations, which
will set the tone for the EU rare disease ecosystem for at least the next two
decades. The theme for this year’s Rare Disease Day is equity, so we wanted to
take the opportunity to dive into some of these debates and asses what the EU
can do in this space, especially against the backdrop of the legislative
To breakdown this Rare Disease Day 2023 and its importance for
addressing the 95% of rare diseases with no treatment, Simone Boselli,
Director of Public Affairs, EURORDIS – Rare Diseases Europe and EUCOPE’s
Alexander Natz join the podcast.
This episode is hosted by EUCOPE’s Government Affairs Director Victor Maertens.