22nd-29th April 2024

Save the Date: World PI Week Kick-off Event: Patient-Clinician Coffee Talk (Hybrid)!

On Friday, 21 April 15h30-16h30 CET, to kick-off this year’s campaign week, World PI Week is hosting its first live-hybrid Patient-Clinician Coffee Talk at UZ Leuven PID Centre in Belgium!

The link to the live streaming is available here: https://bit.ly/3ofwQ4B

The conversations of this live event will focus on:

  • The meaning of real-world data for PID diagnosis, treatment & research
    • How real-world health data translates into knowledge
    • Data’s importance in improving diagnosis, advancing treatment & care, driving innovation and supporting medical education.
  • Advancing PID registries worldwide
    • Importance of patient registries
    • Challenges in the creation and implementation of PID registries
    • Examples and best practices from national PID registries & data collection
    • Global collaboration in data sharing
    • How policymakers can support registries

Speakers: 

  • Sue Saville (Moderator) – Medical Correspondent, United Kingdom
  • Prof. Isabelle Meyts – Centre for Rare Immune Deficiency, Autoimmune and Autoinflammatory Diseases, UZ Leuven, Belgium
  • Dr. Nizar Mahlaoui – Necker Enfants Malades Hospital & the French National Centre for PIDs, France
  • Sarita Workman –  Royal Free London NHS Foundation Trust, United Kingdom
  • Otilia Stanga – International Patient Organisation for Primary Immunodeficiencies (IPOPI), Romania
  • Bruce Lim – Malaysian Patients’ Organization for Primary Immunodeficiencies (MyPOPI), Malaysia
  • Prof. Antonio Condino – Director of the Department of Immunology of the University of Sao Paolo, Brazil – via video message

Meanwhile share our teaser video and help us spread the word!