50% brittle bone patients not getting proper care

Almost half the number of patients diagnosed with brittle bone disease are not getting the care or medical treatment they need, according to a report released by the China-Dolls Center for Rare Disorders, Beijing Times reported.

Wu Yulinglong, six, who was diagnosed with brittle bone disease - osteogenesis imperfecta (OI) - displays the photo she took of a photographer at the opening ceremony of the 3rd National Conference for OI Patients, Beijing, August 3, 2013. [Photo By Zhu Xingxin/ China Daily]

Osteogenesis Imperfecta (OI) – known as brittle bone disease – is a genetic disorder that affects the bones and bone formation.

The report - released at the opening ceremony of the 3rd National Conference for OI Patients on Saturday in the capital – highlights that expensive drugs required to treat the disorder are not covered by medical insurance, said the report.

There are more than 100,000 patients with OI across China. However few NGOs pay attention to this group, which like all groups of rare disorders, exist as minority groups not covered by health care, an official of the Ministry of Civil Affairs (MCA) said.

The MCA will promote the development of commonwealth organizations, advocate public foundations and civil charity organizations. Health care, social assistance and government support need to create a synergy, protecting the lives of people with rare diseases, the MCA's official added.