June 16, 2025
IPOPI National Advocacy and Awareness Workshop in China
IPOPI, in close collaboration with PID Care China, marked a significant milestone for the primary immunodeficiency (PID) community by hosting the first-ever national workshop uniting patients, families, and healthcare professionals from over 11 provinces across China.
Two Days, One Goal: A Stronger Voice for PID Patients
- Day 1 focused on education, featuring expert talks on the latest advances in PID treatment, plasma therapy, transition to adult care, and moving patient stories.
- Day 2 was all about action, as participants worked together to identify key barriers and define advocacy priorities from the patients’ perspective.
Access the full programme, presentations, and report from the meeting here.
What comes next?
The workshop laid the groundwork for patient-driven advocacy in China. The message was clear: patients are ready to act through awareness campaigns, dialogue with healthcare providers, engagement with policymakers, and knowledge-sharing across provinces.
Top priorities voted by patients:
- Stable access and full reimbursement of Ig therapies to all PID patients in China.
- Improved awareness and training for doctors, especially outside big cities.
- Better quality of life — from mental health support to flexible care access.
These patient-defined priorities shape the path for sustained actions ahead. IPOPI and PID Care China will continue working together to turn them into concrete and lasting change.
This meeting was made possible due to the support of CSL Behring, Takeda and Chiesi.
