Publications by authors named "Yunshu Wei"
The progress of, challenges faced by, and future of rare disease patient organizations in China.
Intractable Rare Dis Res
May 2019
Article Synopsis
- Patients in China with rare diseases face not only treatment challenges and high costs but also significant social support deficiencies.
- Since around 2000, these patients and their families have started charitable initiatives, leading to the development of organizations over the past two decades.
- However, many issues persist, such as the small number of organizations, low specialization, instability, limited influence, and restricted access to resources, which call for improved public education, policy support, teamwork, and enhanced collaboration.