What's next for EU Rare Disease Legislation? Its potential implications for patients and pharma entrepreneurs

EUCOPE's Sounds of Science

EUCOPE

Science, Life Sciences

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🗓️ 21 February 2022

⏱️ 23 minutes

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Summary

SOUNDS OF SCIENCE - EPISODE 4

In today’s episode, 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. Today we want to 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 guests for today:

Rachel Finnegan, Head of Government Affairs, BioMarin EMEA
Vittoria Carraro, Associate Director for Government Affairs, EUCOPE

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EUCOPE is Europe’s trade body for small to medium-sized innovative companies working in the field of pharmaceuticals and medical technologies.

Based in Brussels, Belgium, EUCOPE gives voice to more than 900 research-oriented innovative companies and associations active in research, development of pharmaceuticals, biotechnologies and medical devices. Many of our 130 members are developing therapeutic solutions for persons living with a rare disease, who had little to no treatment available just a few years ago.

Our website: www.eucope.org

Twitter: @eucope

Linkedin: EUCOPE

Transcript

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0:00.0	Hello everybody and welcome to Sounds of Science, a series of podcasts hosted by
0:11.7	the European Trade Body representing small and medium-sized companies active in pharmaceuticals and medical technologies.
0:18.8	My name is Dante Diulio and I'm the Communications and Business Development Manager at
0:22.3	Yukope and your host on today's pod.
0:25.0	Before moving forward, I'd like to kindly ask you to click on the subscribe button below
0:28.3	and follow us on Twitter and LinkedIn to stay up to date on all of the latest news
0:31.9	and initiatives within the world of European pharma and biotech.
0:37.5	On today's episode, we'll discuss upcoming developments in the field of rare diseases,
0:41.8	a timely matter as Rare Disease Day approaches on February 28th.
0:46.0	Rare disease is a topic which is very close to the heart of our organization,
0:49.4	as almost half of our 130 members work in the field of medicines for rare disease,
0:54.0	also called orphan
0:54.8	medicinal products or orphan drugs. Rare diseases have an important place on the EU agenda,
0:59.8	with the French presidency position as one of their priorities, plus there continues to be an
1:03.8	increasing level of work at the EU level to foster research and clinical excellence in this field.
1:08.9	Most importantly for our case, the upcoming revision of the EU orphan medicinal products.
1:13.6	Today, we want to give you a little more detail on the background of this revision,
1:17.6	possible outcomes and implications for the rare disease community.
1:20.6	To discuss the topic, we're joined today by Rachel Finnegan, head of Government Affairs at Biomarin Emia,
1:26.6	a leading biopharmaceutical company in the field of rare diseases,
1:30.1	and of course one of you cobes members. And we're also joined by one of our very own, Vittoria Carraro,
1:34.7	Associate Director for Government Affairs here at UKOPE, who leads our association work on orphan medicinal products or OMPs.
	...

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