Monday, 22 February 2021 · 14:00 - 16:00 CET · Online
To mark the opening of Rare Disease week, you’re invited to join this high-level policy debate, that will address the future of European collaboration on rare diseases, to reimagine and transform rare disease policy through access, awareness, and innovation.
We will bring together the European rare disease community to tackle this area of great unmet medical need, gain insights on the impact that policy decisions have on improving early diagnosis and the quality of lives of people affected by rare diseases.
Join us for this virtual series of sessions to examine the most critical issues in rare disease in Europe from different perspectives including policy-makers, innovators, academia and industry, medical professionals and patient organisations, who are leading the conversation around the future of European collaboration on rare diseases.
With thanks from the organizers of this thought-provoking event, a Biogen initiative, in collaboration with Reuters Events and EU40.
Josianne Cutajar Member European Parliament
09:00am – 09:30am
Welcome remarks
Stella Kyriakides European Commissioner for Health and Food Safety
09:00am – 09:30am
Opening conversation: Transforming rare disease policy and improving care
Dolors Montserrat Member European Parliament
Johanna Friedl-Naderer President, Europe, Canada & Partner Markets Biogen
09:00am – 09:30am
Interview: the future of Rare Disease in Europe
Dr. Bertalan Meskó Author Medical Futurist
09:00am – 09:30am
Interlude: Video message on taking joint, swift and decisive action
Josianne Cutajar Member European Parliament
09:00am – 09:30am
Panel: Increase access for patients in Europe through sustainable innovation
Tomislav Sokol Member European Parliament
Yann Le Cam CEO EURORDIS
Nathalie Moll Director General EFPIA
Moderator: Sue Saville Journalist Independent
09:00am – 09:30am
Interview: Driving change in rare disease - an advocate perspective
Jana Popova Patient Advocate Bulgarian Association for Neuromuscular Disease (BAND)
09:00am – 09:30am
Panel: Transformative therapies: how Europe can seize the opportunity
Avril Daly CEO Retina International
Orla Hardiman Professor of Neurology Trinity Biomedical Sciences Institute
Prof. Andrew Ullmann Member of the Bundestag Bundestag
Moderator: Sue Saville Journalist Independent
09:00am – 09:30am
Closing remarks
Stelios Kympouropoulos Member European Parliament
To help spread awareness about rare diseases across Europe, we’re inviting all those in the rare disease community to get involved with our #Icare4rare Campaign.
It’s easy to join in – simply download the Toolkit below to access a selection of images containing a statement about rare diseases to share on social media along with the hashtag #Icare4rare.
Rare Disease Day is an initiative to raise awareness about rare diseases and their impact on patients’ lives, first launched by EURORDIS and its Council of National Alliances in 2008. Over the past 10 years, Rare Disease Day has become an internationally recognised awareness raising campaign, with events taking place in over 90 countries and regions.
On the occasion of Rare Disease Day 2021, EURORDIS plans its very first Rare Disease Week in a virtual format, including the following happenings:
Monday 22 Feb |
Model EU role-play |
Tuesday 23 Feb |
Rare2030 Final Conference Webinar with MEP Individual meetings with MEPs |
Wednesday 24 Feb |
Webinar with the European Commission Webinar with Permanent Representation to the European Union Individual meeting with MEPs |
Thursday 25 Feb |
Group task: How to influence the EU Council |
Friday 26 Feb |
RDW debrief |
Get in touch with the Reuters Events team