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MessagePosté le: Dim 4 Mar - 09:03 (2018) Répondre en citant

Liu Yuliang Josh Doctson Jersey , 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, 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 Earnest Byner Redskins 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 3,500 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 John Riggins Redskins Jersey , such as health, 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, 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 Montae Nicholson Redskins Jersey , there should be 'green channels' for patients to have access to drugs," said Lian Yuqiang, an associate professor at the East China University of Political Science and Law, who has been working on legislation for rare diseases for many years.

A green channel is a fast track for a drug from outside China to obtain approval, according to Lian.

Some patients with rare diseases face poor drug supplies because some drugs are not allowed to enter China due to restrictions.

"Most of the drugs are expensive, and are a huge financial burden for patients and their families. The government should also work to bring the drugs under medical insurance coverage when they are introduced into China," Lian said.

Globally, there are about 5,000 to 6 Samaje Perine Redskins Jersey ,000 rare diseases, such as leukemia, albinism, Pompe disease, Gaucher disease and amyotrophic lateral sclerosis. Most rare diseases do not have effective treatment methods.

As the Tunku arrived down the winding staircase, right before I could stand up, the 3 giant-pictures went ahead and greeted the old man with gusto. “Tunku Tunku! I just bought a 300-greenback shirt from Hong Kong for you. Can you play golfing this Thursday? We’ve book the golfing training course,” a person of the Chinese reported loudly.

Tunku, with barely a glance Fabian Moreau Redskins Jersey , waved him aside. The second Chinese man cheerfully came ahead and reported, “Tunku, we’ve shaped a Bumiputra provider – 51 percent Malay and 49 p.c Chinese. Can you sign for us? We got a piece of land in Balik Pulau, we want to create into a holiday resort.”

Tunku retorted, “The place did the Malays get the money to kind the corporation to do substantial business enterprise?”

The tycoon confessed, “Literally we place up the capital for them.”

“I know the Malays have no dough. You Chinese have the profit but nevertheless I just can not basically sign the application for you. You have to inform me who are these families, what is their background?” Tunku admonished.

“Ok, Ok! I’ll do that Tunku,” the guy mentioned and quietly sat down.

Then the Indian Muslim gentleman fortunately introduced that he had convinced a pal in Sungei Pattani to settle for Islam.

Tunku nodded happily and asked him to sit down. He then came directly to the Malay lad and me and warmly shook our fingers and attended to us Ryan Anderson Redskins Jersey , enquiring no matter if we had our coffee and how he could allow us.

We reported certainly and thanked him for the coffee. The Malay boy and I felt 10 feet tall the way Tunku taken care of us in front of the a few wealthy and robust company.

The Malay boy mentioned he had left school just after sort a few and could not locate a work and his family unit ended up inadequate. Tunku advised him if he was not fussy about handbook job, he would get him a job with the JKR (Public Functions Department) tending trees and parks, and promptly dictated a letter to the secretary.

Turning to me, he explained, “You have a condition with your passport when deportation from Burma. Just yesterday the immigration director from KL was right here to visit me. What a coincidence! He instructed me if I need to have any benefit you should not hesitate to tell him. I will give you a letter. You go to KL immigration and see him. You will get your passport back again in no time.”

Two weeks before I had my first experience with the Tunk. NFL Jerseys Wholesale   Hockey Jerseys China   MLB Jerseys From China   Jerseys China   NHL Jerseys Cheap   MLB Jerseys Free Shipping   Adidas NHL Jerseys China   New NFL Jerseys Cheap   Nike NFL Jerseys China   College Baseball Jerseys Wholesale 

MessagePosté le: Dim 4 Mar - 09:03 (2018)

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