In China, there is no clear definition of rare diseases, and the country has not yet formulated a separate law to protect the legitimate rights and interests of patients with rare diseases. In daily life, the right to education of patients with rare diseases is not optimistic. Zheng Qing (alias) is one example. On January 22 this year, Zheng Qing, a college student in Beijing, filed an indictment with the Haidian District People's Court against the China Institute of Labor Relations, where he studied. Because he was not in the college entrance examination [Weibo] The medical history of hemophilia B was filled in the previous medical history column of the physical examination form, and the school was cancelled. However, he believed that the school's practices violated the equal right to education of patients with hemophilia, and asked the school to revoke its decision to cancel their school status.    

Cancelled due to hemophilia

Zheng Qing, a 2014 freshman, reported to China Institute of Labor Relations on September 11, 2014 to study journalism at the Institute of Culture and Communication. Ms. Zhang, Zheng Qing's family, said that the day before the school organized military training, Zheng Qing informed the counselor that he was suffering from hemophilia and could not participate in military training.  

Due to the lack of coagulation factors in the blood, hemophiliacs are prone to muscle bleeding, joint bleeding, intracranial bleeding and other situations in life, and even a small wound may cause bleeding. At present, according to the internationally accepted classification, hemophilia is a rare disease. Ms. Zhang said that Zheng Qing had never been rejected by the school before when he was in primary school, junior high school and senior high school.

After Zheng Qing confessed all this to the instructor, on December 10, the China Institute of Labor Relations made a decision to cancel Zheng Qing's student status. According to the decision, according to the document of the Ministry of Education, "the school may not admit patients with serious blood diseases". However, the physical examination information of the student's college entrance examination electronic file does not show a history of hemophilia, and the physical examination information shows that the student is qualified. The school enrollment management regulations, "Anyone who violates the enrollment regulations, practices fraud, or engages in malpractices for personal gain to obtain admission qualification, will be disqualified whenever found." Therefore, the school decided to cancel Zheng Qing's enrollment.

There is no standard for serious condition

"The Ministry of Education has clearly stated that only serious blood diseases can be considered as a factor for schools to consider whether to enroll or not. But who can judge whether it is' serious'? The standard of 'serious' should at least be' diseases that cannot complete their studies and cannot take care of themselves. Obviously, Zheng Qing's situation does not conform to this." The attorney employed by the family side said. This National Two Sessions, the National People's Congress that made a legislative appeal for rare diseases [Weibo] On behalf of Sun Zhaoqi, he said that it was precisely because the country had not issued any identification regulations for rare diseases that led to such differences in definition.

On January 22, 2015, Zheng Qing submitted an indictment to the Haidian Court, suing the China Institute of Labor Relations and asking the school to revoke its decision to cancel its student status.    

In the afternoon of March 2, the reporter of Yangcheng Evening News called Zheng Qing's attorney Yan Xin. It is reported that the Haidian Court has accepted the indictment, but has not decided whether to file the case. The court suggested that Zheng Qing appeal to the Beijing Municipal Commission of Education, and if he could not coordinate, he would sue the Beijing Municipal Commission of Education again, and sue the school as a third party. At present, Zheng Qing has appealed to the Beijing Municipal Education Commission.

Luoping