News - February 24, 2022
🎙️Sounds of Science Podcast – EPISODE 4 on EU Rare Disease Legislation
On our latest Sounds of Science Podcast, we discuss upcoming developments in the field of rare diseases, a timely matter as Rare Disease Day approaches on 28 February. Rare disease is a topic which is very close to the heart of our organisation, as almost half of our 130 members work in the field of medicines for rare diseases, also called orphan medicinal products or orphan drugs.
Rare diseases have an important place on the EU agenda, with the French presidency positioning it as one of their priorities plus there continues to be an increasing level of work at the EU level to foster research and clinical excellence in this field. Most importantly for our case, the upcoming revision of the EU orphan medicinal products.
On this episode, we give you a little more detail on the background of this revision, as well as the possible outcomes and implications for the rare disease community. Our special guests are:
- Rachel Finnegan, Head of Government Affairs, BioMarin EMEA
- Vittoria Carraro, Associate Director for Government Affairs, EUCOPE
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EUCOPE is also a member of the European Expert Group on Orphan Drug Incentives (hereafter, OD Expert Group), which came together in 2020 to develop policy proposals to facilitate EU policymakers to meet the challenge of devising a policy framework that improves orphan medicinal product (OMP) development. The group brings together representatives of the broad rare disease community, including researchers, academia, patient representatives, members of the investor community, rare disease companies and trade associations. The group’s work builds on the recognition that only an ambitious policy agenda developed in a multi-stakeholder setting can bring about the quantum leap needed to address unmet needs of rare disease patients today.