STORY
In China, co-creation gives a voice to hemophilia patients
While patient journey maps often focus on clinical milestones, patients’ lived experience is rarely so straightforward. Individuals with rare diseases can face social, emotional, and systemic challenges across the full spectrum of care.
With our Sanofi global patient council, the “Co-Lab,” we co-created a comprehensive patient journey framework. One of the member organizations, the Chinese Organization for Rare Disorders (CORD), then applied this to the Chinese hemophilia community. Patients were invited to identify their pathway to and within healthcare, helping provide a framework for developing more informed solutions, and fostering greater dialogue within the rare disease community.
In September 2025, this exceptional initiative was recognized at the 14th China Rare Disease Summit, winning the Golden Snail Award for advancing rare disease awareness.
The 14th China Rare Disease Summit, 2025
Hear from two of our partners
“Sanofi has been a steadfast partner with our patient organization for over a decade. They respect our contributions, and value partnerships and the lived experience of patients. Our working relationship is transparent, open, and valuable.”
“Our association is very satisfied with the quality of its collaboration with Sanofi. We particularly appreciate the relevance of the projects proposed to us. We also appreciate the quality of our exchanges, which are regular throughout the year, always constructive and based on trust.”