Listen "Action within reach: Shaping the future at ECRD 2024"
Episode Synopsis
On 15-16 May 2024, EURORDIS-Rare Diseases Europe will be hosting the 12th edition of the European Conference on Rare Diseases and Orphan Products (ECRD), online and in Brussels. As preparations for the largest, patient-led rare disease policy-shaping conference ramp up, host Julien Poulain speaks to three guests about what they are most looking forward to about the event.
Sharon Ashton, Events and Open Academy Director at EURORDIS, explains how ECRD has evolved over the years. Valentina Bottarelli, Public Affairs Director and Head of European Advocacy of EURORDIS, speaks about why ECRD 2024 promises to shape European policymaking on rare diseases, with it taking place just weeks before elections to the European Parliament. Gabriella Almberg, the Global Head of Rare Disease Policy & Public Affairs at UCB, and a representative of industry on the ECRD 2024 Programme Committee, discusses why the conference presents such a valuable opportunity for the developers of rare disease medicines to meet and learn from our community.
Make sure to register for the conference and stay up to date by visiting the ECRD 2024 website: https://www.rare-diseases.eu/
You can also get in touch with the podcast by emailing [email protected], and join the conversation on social media using the hashtag #EurordisRareOnAir!
Sharon Ashton, Events and Open Academy Director at EURORDIS, explains how ECRD has evolved over the years. Valentina Bottarelli, Public Affairs Director and Head of European Advocacy of EURORDIS, speaks about why ECRD 2024 promises to shape European policymaking on rare diseases, with it taking place just weeks before elections to the European Parliament. Gabriella Almberg, the Global Head of Rare Disease Policy & Public Affairs at UCB, and a representative of industry on the ECRD 2024 Programme Committee, discusses why the conference presents such a valuable opportunity for the developers of rare disease medicines to meet and learn from our community.
Make sure to register for the conference and stay up to date by visiting the ECRD 2024 website: https://www.rare-diseases.eu/
You can also get in touch with the podcast by emailing [email protected], and join the conversation on social media using the hashtag #EurordisRareOnAir!
More episodes of the podcast Rare on Air
Rare Disease Day: Christine's story
18/12/2025
Rare Disease Day: Annarita's story
04/12/2025
Rare Disease Day: Ahmed's story
20/11/2025
Tomasz Grybek on patient involvement and making lived experience count in regulatory decisions
03/07/2025
Rare Disease Day: Noah's story
26/02/2025
Rare Disease Day: Eden's story
19/02/2025
ZARZA We are Zarza, the prestigious firm behind major projects in information technology.