October 9, 2023

IPOPI discusses gene and advanced therapies at the EU Parliament

IPOPI held a significant event at the European Parliament on Wednesday, September 28. Hosted by MEP Kateřina Konečná from The Left party in the Czech Republic, the forum focused on “Unlocking the Potential of ATMPs and Gene Therapy.”

The meeting was very well attended, with experts from the field of primary immunodeficiencies and gene therapies, exchanging opinions on the challenges and opportunities that the field is facing and how the main issues that the development, approval, and access of these therapies could be jointly tackled by experts, patients and policymakers. The expert panel led to a fruitful discussion that will be used to further explore how future pharmaceutical legislation can support the availability and accessibility to these innovative and life-saving therapies. In light of this, a call to action from IPOPI’s most recent forum focused on this legislation was also shared with the participants.

Johan Prevot, Executive Director of IPOPI, was the moderator of the Forum that counted with the following speakers:

  • Prof Claire Booth, AGORA Co-founder;
  • Prof Fabio Candotti, ESID President;
  • Prof Arjan Lankester, RECOMB Project coordinator and principal investigator;
  • Brian O’Mahony, Iris Haemophilia Society Chief Executive;
  • Ms Martine Pergent, IPOPI President.

The PID Forum counted the participation of the following patient representatives: Otilia Stanga (Romanian NMO), José Verstegen and Sian van den Bogaerdt-Rance (Dutch NMO).

The presentations from the day, as well as the report, will shortly be available on IPOPI’s website. Stay tuned!

IPOPI would like to thank CSL Behring, Grifols, and Takeda for their continued support.