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The shake-up of orphan and pediatric rules Virtual event

17 March at 9:00-10:00 CET

The EU’s orphan disease regulation has been undoubtably successful in bringing more treatment options for rare diseases to the market in the last 20 years. Despite this, 95% of patients with a rare condition are still left with no treatment available including children. 

Organised by POLITICO in partnership with EFPIA, this virtual event seeks to discuss how the major review of the EU pharmaceutical strategy, including a re-write of the orphan drugs and pediatric regulations, can support the much needed innovation for rare and pediatric diseases.

Some of the questions that our speakers will address are:

  • What can the health care sector expect from the revamped orphan and pediatric rules ?
  • Does the definition of rare disease still make sense?
  • How can incentives be balanced with the need to create financially sustainable health systems in Europe? And how can incentives stimulate innovation in areas of real unmet needs?
  • Do the current incentives match the difficulties companies face when developing orphan drugs?
  • How can Europe achieve faster, more equitable access to orphan medicines across the bloc?

Speakers already confirmed

Nathalie Moll
, Director General, EFPIA
Olga Solomon, Head of Unit, DG SANTE, European Commission
Jean-Christophe Tellier, CEO, UCB
Gilles Vassal, Board member, SIOPE Europe, the European Society for Paediatric Oncology

Virginie Hivert, Therapeutic Development Director, EURORDIS, will join as fishbowl panelist.


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