Because it’s such a large country, China is believed to have the world’s largest population of rare disease patients.
To raise awareness and improve care, the country’s rare disease community recently held its ninth annual Rare Disease Summit. Jointly organized by the Chinese Organization for Rare Disorders (CORD) and Huaxi Hospital of Sichuan University, the event attracted nearly a thousand experts worldwide.
CSL Behring was among the event’s sponsors to help raise awareness and improve the standard of care for patients.
“CSL Behring China is committed to collaborate and work on innovative products for rare disease patients that improve their quality of life,” said Harold Chan, Vice President and General Manager, CSL Behring Commercial Operations Greater China. “We continue to support the activities of rare disease patient groups in China with a focus on raising public awareness, education, identification of unmet medical needs and improving accessibility of diagnosis and treatment.”
In addition to sponsoring the summit, CSL Behring earlier this year commissioned research from The Economist Intelligence Unit to explore the landscape in Asia for people who have rare diseases.
The survey of 500 health care professionals looked at China, Australia, Japan, South Korea and Taiwan and found only one-third of patients received the best available evidenced-based care. An estimated 258 million people in Asia live with one of 7,000 known rare conditions, the research found.
In China – which was similar to other countries surveyed – most health care professionals said patients do not receive the best evidence based care for several reasons:
- Lack of clinical practice guidelines
- Lack of regulatory approval of medicine
- Lack of funding for testing and treatment
See the full report from The Economist Intelligence Unit here: Suffering In Silence