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EUCOPE's Sounds of Science
EUCOPE
19 episodes
5 days ago
Helping you get acquainted with the most pressing EU policy files on pharmaceuticals and biotechnologies. Brought to you by EUCOPE, the European Confederation of Pharmaceutical Entrepreneurs.
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Life Sciences
Science
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All content for EUCOPE's Sounds of Science is the property of EUCOPE and is served directly from their servers with no modification, redirects, or rehosting. The podcast is not affiliated with or endorsed by Podjoint in any way.
Helping you get acquainted with the most pressing EU policy files on pharmaceuticals and biotechnologies. Brought to you by EUCOPE, the European Confederation of Pharmaceutical Entrepreneurs.
Show more...
Life Sciences
Science
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Rare Disease Day 2023: Improving equitable access and diagnosis for people living with a rare disease
EUCOPE's Sounds of Science
47 minutes 51 seconds
2 years ago
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

______________________________________________________________________

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. 

EUCOPE's Sounds of Science
Helping you get acquainted with the most pressing EU policy files on pharmaceuticals and biotechnologies. Brought to you by EUCOPE, the European Confederation of Pharmaceutical Entrepreneurs.