The construction of China's rare disease diagnosis and treatment network is advancing steadily, bringing new hope to patients who have long lacked attention and medical resources. Through the continuous improvement of the national rare disease catalog, nationwide collaboration networks and safeguard policies, more and more rare disease patients can be diagnosed in time and receive standardized treatment.
Development of the rare disease system
China has released multiple batches of rare disease catalogs, clarifying the diseases that require priority protection. A nationwide rare disease diagnosis and treatment collaboration network has been established, with national leading hospitals and provincial backbone hospitals participating, promoting the homogenization of rare disease treatment capabilities.
Regarding drug accessibility, China has accelerated review and approval and conducted medical insurance negotiations, bringing more innovative drugs into the Chinese market and reducing patient burden.
Significance for patients
Rare disease patients often face three major difficulties: diagnosis, treatment and expensive medication. The improvement of the treatment network allows patients to find suitable experts faster and receive standardized treatment, while patient assistance programs and safeguard policies reduce financial pressure.
Advice for international patients
Some rare diseases already have mature treatment plans internationally. International patients can evaluate the feasibility of treatment in Shanghai through remote consultation, bringing complete genetic testing and medical records.
MedBridge services
MedBridge can help rare disease patients connect with relevant experts in Shanghai, providing case translation, remote consultation arrangements and coordination for treatment in Shanghai.