50% brittle bone patients not getting proper care
Updated: 2013-08-05 14:57
(chinadaily.com.cn)
|
|||||||||||
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.
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.
Related Stories
Rare diseases not well treated in China 2013-02-24 21:39
Spotlight shines on rare diseases 2012-02-29 10:33
Government urged to ease financial burden on patients with rare diseases 2013-03-04 07:46
Today's Top News
Shanghai probes sex claims against officials
Association urges Chinese to have a living will
US extends closure of embassies
New Zealand milk stokes fears
EU solar deal hailed as blueprint
Riding the clean energy boom today
Foreign investors welcome in Beijing
Bespoke shoes, Italian-style, made in China
Hot Topics
Lunar probe , China growth forecasts, Emission rules get tougher, China seen through 'colored lens', International board,
Editor's Picks
Urban push |
Reaching for the summit |
New energy vehicles await fuel injection |
Language: Spreading the word |
Finding inner peace on ocean wave |
Duo find new lives, homes a world apart |