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
- 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!