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First Rare Disease Summit held in Beijing

03-01-2012 07:32 BJT

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February 29th marks the fifth international Rare Disease Day. Hundreds of organizations from more than 40 countries and regions worldwide have organized awareness-raising activities around the slogan "Rare but strong together".

Rare Disease Day is an annual, awareness-raising event, coordinated by the European Organization for Rare Diseases and the National Alliances of Patient Organizations. Activities take place across Europe, all the way from Russia, continuing to China and Japan, in the US and Canada, and finally in Australia and New Zealand every year. The focus of this year’s event is Solidarity.

February 29th marks the fifth international Rare Disease Day. Hundreds of organizations
from more than 40 countries and regions worldwide have organized awareness-raising
activities around the slogan "Rare but strong together".

During the Beijing summit, health officials, experts and some patients discussed rare diseases from the medical, legal, social and policy-making perspectives.

Huang Yu, vice director of Medical Department of Beijing University said: “Although we call it rare disease, it actually needs social, medical and political areas to work together.”

A senior Chinese health official attending the summit spoke on the importance of acknowledging and working towards a cure for rare diseases, followed by three featured seminars. Mrs. Zhang Quanling, the promotion ambassador, held a seminar regarding the current social securities for patients of rare disease in China.

A rare disease, usually refers to any disease that affects a small percentage of the population. It is estimated that there are between 6 and 7 thousand distinct rare diseases in the world, and over 10 million rare disease patients in China. Few drugs have been founded to cure the illnesses and their prices are usually out of reach to those suffering. Very few companies are willing to manufacture inexpensive medicine, due to low cost benefit, making the need for global social security higher.

Reporter: “Today, the diagnosis for rare disease patients remains a challenge. Most of them are lacking dedicated therapies and medicines. But what they need is to be treated as normal people. More concerns should be given to them.”

February 29th marks the fifth international Rare Disease Day. Hundreds of organizations
from more than 40 countries and regions worldwide have organized awareness-raising
activities around the slogan "Rare but strong together".

Tele interview: China's efforts in tackling rare diseases

For more on the issue we are joined on the line by doctor David Rutstein - vice president for medical affairs at the United Family Healthcare System and former deputy surgeon general of the United States.<Full story>

Background of Rare Disease Day

For more on Rare Disease Day, we are joined by Li Kefu at the studio.<Full story>

 

Editor:Zhang Rui |Source: CNTV.CN

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