Rare Disease Day 2023: Improving equitable access and diagnosis for people living with a rare disease

SOUNDS OF SCIENCE - EPISODE 13

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, Paediatics, and OMP Regulations, which will set the tone for the EU rare disease ecosystem for at least the next 2 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 review.

To breakdown this year’s Rare Disease Day and its importance for addressing the 95% of rare diseases with no treatment, we’re joined by:

• Simone Boselli, Director of Public Affairs, EURORDIS - Rare Diseases Europe
• Alexander Natz, Secretary-General, EUCOPE

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For more information on EUCOPE’s efforts on rare diseases and orphan drugs or how your organisation can contribute to it, please contact Victor Maertens maertens@eucope.org or visit our Rare Disease Hub.