June 17, 2024

IPOPI holds PID Forum on Empowering the PID Community through Rare Disease Policies

On March 21, 2024, IPOPI held the EU PID Forum” Empowering the PID Community through Rare Disease Policies 2024-2029″ at the European Parliament in Brussels, Belgium. The Forum was chaired by Member of the European Parliament (MEP) Radka Maxová, S&D, Czechia.

The Forum, moderated by Ms Leire Solis, IPOPI’s Health Policy and Advocacy Senior Manager, reviewed the 2019-2024 parliamentary term from the perspective of patients with primary immunodeficiencies (PIDs) and healthcare experts and discussed the remaining unmet needs and key asks for the term starting after the European elections in June 2024. As an outcome of the Forum, a political manifesto 2024-2029 was launched so that EU national member organisations (NMOs) could, if they wished to, engage with politicians during the political campaign or after their election.

The speakers in this Forum ranged from patients and patient representatives to healthcare experts:

  • Ms Anne-Sophie Henry-Eude, a patient member of the French PID patient organisation IRIS.
  • Ms Patricia Luck, Vice-President of the International Nursing Group of Immunodeficiencies (INGID) and an advanced practice nurse in immunology at the University Children’s Hospital Zurich, Switzerland.
  • Prof Isabelle Meyts, PID physician paediatrician at University Hospital Leuven, Belgium.
  • Dr Eva Varga, Vice President of the Hungarian Organisation for Patients with Immunodeficiencies (HOPI).
  • Mr Wim De Geest, Chairman of the Belgian Patient Organisation for Primary Immunodeficiencies (BePOPI).

During the open floor discussion, additional patient representatives took the floor: Mr David Jiménez González (board member of the Spanish PID patient organisation, AEDIP), Ms Kersti Urbala (President of the Estonian Patient Society for Primary Immunodeficiencies), Ms Jose Verstegen (President of the Dutch PID patient organisation) and Ms Linda Engel (member of the German PID patient organisation, DSAI).

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

If you want to know more about the PID Forum, please check the report.

The political manifesto 2024-2029 is available here.