Events & Meetings / News - July 28, 2021

Event Report: EUCOPE/FranceBiotech roundtable ‘OMP Regulation Revision, perspectives of the French rare disease community’

EUCOPE, in partnership with FranceBiotech, hosted a roundtable on the revision of the orphan medicine and paediatric regulations with French stakeholders on 30 June.

The orphan and paediatric legislation has considerably accelerated research efforts over the last two decades and has contributed to the development of more than 190 treatments in the field of rare diseases. The revision of the legislative framework will impact patients, the research environment and the healthcare ecosystem as a whole. It is important that rare disease patients are aware of the potential impact of the revision. In addition, the medical research sector in France is particularly dynamic and hosts around 2,000 companies, mainly SMEs, which together have filed more than 5,000 patents since the legislation was adopted.

EUCOPE and France Biotech organised a roundtable with a panel of experts in order to improve the awareness of French stakeholders and to discuss how to ensure that the regulatory environment is conducive to innovation and allows better access to innovative therapies for patients. The roundtable gathered patient groups, research experts, industry representatives and public authorities.


  • Daniel Scherman, President, Rare Diseases Foundation


  • Dominique Riquet, Member of the European Parliament, Renew Europe
  • Daria Julkowska, Deputy Director, INSERM and Coordinator of the Joint European Programme on Research in Rare Diseases (EJP RD)
  • Franck Mouthon, President, France Biotech


  • Antoine Mialhe, Managing Director, Head of the Brussels Health Unit, FTI Consulting

Re-watch the event here.


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