Chinese Red Cross works to improve rare disease healthcare

Globally, a unified definition for rare diseases is lacking. Many experts in China regard rare diseases as those whose incidences are lower than one per half a million among the total population, or diseases with incidences of less than 1 per 10,000 among newborn babies.

Globally, means of diagnosis and treatment are generally lacking for rare diseases, and of all reported rare diseases, which number more than 7,000, effective drugs are only available for 10 percent of them, according to the foundation.

Chen Zhu, president of the Red Cross Society of China, said with improvement of medical insurance policies in China in recent years, some drugs for some serious diseases, which were not covered by basic medical insurance programs, are now covered. But many drugs for rare diseases are still not covered, resulting in a number of rare disease patients lacking access to drugs.

In China, about half of the 55 drugs available for rare diseases, which are usually very costly, are not covered by basic medical insurance programs, according to the foundation.

In addition, training should be improved for doctors to improve diagnosis and treatment for rare diseases, especially to pediatricians in less developed areas, such as western China, so they are more capable of diagnosis and treatment of rare diseases, many of which are inherent, Chen said.