Chinese Version
Shandong Province Scored a First by Starting the Information Registration of Rare Cases


Issued:2017-3-1 16:10:37¡¡¡¡Reading£º1624¡¡

On February 26, 2017, in the occasion of the World Rare Disease Day, Shandong Rare Disease Prevention and Treatment Society, Rare Disease Branch of Shandong Medical Society, Shandong Medical Biotechnology Research Center, Shandong Academy of Medical Sciences, Shandong Health and Family Planning Commission jointly held the Initial Meeting of Shandong Province Information Registration of Rare Cases, which indicates Shandong is the first province nationwide to start the information registration work. It is an innovative initiative to promote the province and the country’s rare disease prevention and control.
       Qiu Bingyu, deputy director of the Shandong Health and Family Planning Commission, Han Jinxiang, president of Shandong Rare Disease Prevention and Treatment Society and secretary of the Party Committee of SAMS, and Li Quantai, executive vice president and secretary of the Party Committee of the Red Cross Society attended the meeting and give speeches. Qiu Bingyu and Han Jinxiang jointly unveiled the nameplate of the Administration Office of Shandong Rare Disease Registration.
       In recent years, rare disease prevention and control work in Shandong Province has been at the forefront of the country, creating a number of firsts. It established the first rare disease academic group- Shandong Rare Disease Prevention and Treatment Society, and built the first rare disease national organization-China Rare Disease Prevention and Control Alliance. Shandong Academy of Medical Sciences took the lead in the project approval and completion of the first national comprehensive prevention research project of rare disease, carried out the largest thorough investigation of rare disease in China, established a rare disease clinical resource library, and registered more than 10,000 cases of rare cases.
The meeting first published 68 rare diseases including amyotrophic lateral sclerosis, brittle bone disease, idiopathic pulmonary hypertension and so on. On March 1, the information registration will start in Tertiary General Hospitals, Tertiary Children Hospitals and Tertiary Maternal and Child Health Hospitals in Shandong.

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