Hemophilia is a rare genetic blood disorder that prevents blood from clotting and can lead to death. (Photo : Google)
China Women's Development Foundation (CWDF) hosted a charity event in Beijing to mark the celebration of World Hemophilia Day on April 17, Women of China reported on Monday.
The purpose of the event was to educate the public about hemophilia, a rare genetic blood disorder that prevents blood from clotting and can lead to death, as well as other rare diseases to help the victims suffering from them improve their conditions.
Different organizations shared their perspectives and expectation of the diseases as well as the changes in the past years.
The CWDF pledged that they will conduct a public dissemination campaign about the diseases as they unite social sectors, find a solution for the suffering patient and their family, provide welfare platforms, collect resources from the public to offer compassion to the patients' family and help them associate with normal people.
Just recently, the organization has associated with the Center for Rare Disorders from Beijing and had a medical mission program to provide medical and other necessary aid to indigent children affected with hemophilia.
Thirteen children has availed the medical aid, while 85 children were given a living benefit.
The project called the "99 Wish Tree" was launched by Guan Tao, president of Center for Rare Disorders under the Hemophilia Home in Beijing, which aims to grant the wishes of 99 hemophilia patients across the country with the help of public sponsors.
According to studies, China has approximately 100,000 hemophiliac patients and half of them are children.
However, only 10 percent of the cases were recorded and almost 90 percent does not receive proper medication.
To help the affected children grow healthily, preventive medication and physical activities are needed.
But due to the shortage of information provided to the public and the costly treatment, the fast recovery of the patients is often compromised.
