Shandong province recently launched a rare disease registry. 

Shandong's Class A tertiary comprehensive hospitals, Class A tertiary children hospitals and Class A tertiary maternal and child care service centers have set up reporting mechanisms as of March 1 to register rare diseases such as amyotrophic lateral sclerosis, brittle bone disease and idiopathic pulmonary hypertension.

"Rare diseases registration is a prevention and control measure accepted by the international community. The registration mechanism can accurately count the number of patients and which rare disease they suffer," said Qiu Bingyu, vice-director of the Health and Family Planning Commission of Shandong province. 

Qiu said that rare disease registration supports a reasonable distribution of medical resources allowing concentration on the treatment and research of rare diseases.

Shandong province has taken many measures to prevent and control rare diseases in recent years including setting up the Shandong rare diseases prevention and control association, a rare disease academic group.