Media Partnership - Living with SMA: Spotlight on the policy and access environment in Europe
05-10-2021
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In an effort to better understand the policy and access environment in Europe for people living with Spinal Muscular Atrophy (SMA), SMA Europe and Biogen, in collaboration with Charles River Associates, have developed the White Paper ‘Assessing the policy and access environment across European countries for SMA patients’ and the accompanying ‘SMA Policy & Access Tracker’. These offer a comparative assessment of the status of SMA access and policy across 23 European countries and put forward policy recommendations to improve access to care for people living with SMA in Europe.
With this interactive multi-stakeholder virtual roundtable, SMA Europe and Biogen want to present their work and bring light to the challenges faced by people living with SMA. The event will bring together national and EU-level stakeholders with an interest in SMA and neuromuscular rare diseases and provide a platform to analyse issues surrounding SMA care in Europe.
The event will offer a unique opportunity to hear more about the policy and access environment across 23 European countries for people living with SMA, to learn about best practices and gaps in SMA care and to gain a greater understanding of how to tackle these with clear policy actions.
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ORGANISED BY: SMA Europe and Biogen
MEDIA PARTNER: EURACTIV
Location
Online
Panellists
Stelios Kympouropoulos, Member of the European Parliament
Tomislav Sokol, Member of the European Parliament
Dr. Nicole Gusset, President, SMA Europe
Prof. Maggie Walter, Associate Professor of Neurology, Ludwig-Maximilians-University of Munich
Prof. Marcin Czech, Head of the Department of Pharmacoeconomics at the Institute of Mother and Child in Warsaw, Poland
David Nestor, Head of Neuromuscular Diseases, Europe, Canada and Partner Markets, Biogen
Steven Kelly, Vice President, Life Sciences, Charles River Associates
Moderator
Tamsin Rose, Senior Fellow, Friends of Europe
Schedule
11:00 - 11:05 Welcome note
11:05 - 11:10 Keynote speech
11:10 - 11:30 Presentation of the White Paper “Assessing the policy and access environment across European countries for SMA patients”
11:30 - 12:00 Panel Discussion
12:00 - 12:20 Q&A
12:20 - 12:25 Concluding remarks
12:25 - 12:30 Conclusion
Contact
Tamara Novel
tamara.novel@euractiv.com
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Access to SMA standards of care remains an open issue in Europe
For people living with spinal muscular atrophy (SMA), access to suitable and effective treatment often depends on which EU country they live in. Stakeholders are now calling for equal access to standards of care across the bloc.