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Geplaatst: 18-09-2018 06:19:12 Onderwerp: DMD is a fatal rare disease |
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Liu Yuliang, a patient with amyotrophic lateral sclerosis, also known as Lou Gehrig's disease, is helped by his father as he enters his home in Ganzhou, Jiangxi province Devin Funchess Panthers Jersey , on Wednesday. The disease attacks nerve cells and ultimately causes total paralysis. The number of ALS patients in China is estimated at over 100,000. Chen Dichang for China Daily
Experts at an international seminar held over the weekend at the Children's Hospital of Fudan University called for legislation and related policies on the prevention and treatment of rare diseases.
It is estimated that more than 10 million people in China have rare diseases.
A rare disease, also known as an orphan disease, is any disease that affects between 0.65 and 1 percent of the population. About 80 percent of rare diseases are genetic, and many appear early in life.
"Despite the huge number of cases Shaq Thompson Panthers Jersey , the related work in China such as research, regulations and social support are only developing slowly," said Li Dingguo, chairman of the rare disease branch of the Shanghai Medical Association.
"Related regulations should be created to help provide better support to patients with rare diseases and their families," Li said at the international seminar at the Children's Hospital on Duchenne Muscular Dystrophy.
DMD is a fatal rare disease that eventually leads to heart failure due to muscular paralysis. About 1 in 3 James Bradberry Panthers Jersey ,500 people have the disease, and China is one of the countries with the highest numbers of DMD patients.
In 2011, the Children's Hospital of Fudan University established a pathologic diagnosis lab and specialized outpatients service for DMD. It also carried out a series of activities to support DMD patients and their families and to educate the public to prevent the disease.
"The prevention of rare diseases is a comprehensive work, and requires the work of various departments, such as health Daeshon Hall Panthers Jersey , medical insurance and civil affairs. In this regard, an integrated body should be established to head up the project on rare diseases," Li said.
Some areas in China, including Beijing, Shanghai Taylor Moton Panthers Jersey , Shandong and Guangdong province, have already started research work and established academic platforms for rare diseases.
"But this is not enough. A national-level academic platform should be set up as well," Li said.
"The prevention work for rare diseases will be an important part of the legislation. Besides that, there should be 'green channels' for patients to h. Wholesale Jerseys Free Shipping Wholesale Authentic Hockey Jerseys Wholesale Football Jerseys China Wholesale College Basketball Jerseys Cheap Jerseys China Cheap Jerseys Wholesale Retro Soccer Jerseys Cheap Jerseys China Cheap Jerseys From China Cheap College Jerseys |
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