《TAIPEI TIMES 焦點》 NGO receives letters of support

DISPLAY OF SOVEREIGNTY: Tseng Min-chieh said he had prepared contingency plans to enter the UN headquarters after he was warned that China might block him

By Lee I-chia / Staff reporter

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The Taiwan Foundation for Rare Disorders yesterday said that it has received numerous letters of solidarity and support from non-governmental organizations （NGOs） around the world after a speech prepared by its chairman for a UN-affiliated meeting on rare diseases in New York was blocked by China earlier this month.

“The foundation has strived for 20 years only to make a 10-minute speech at the UN. It was a rare honor to share the foundation’s experience and efforts with the world, but sadly the speech was blocked 30 minutes before the meeting began,” foundation chairman Tseng Min-chieh （曾敏傑） told a news conference in Taipei yesterday.

Tseng was referring to an incident on Nov. 11 at the launch of the NGO Committee for Rare Diseases, where he was supposed to deliver a keynote speech titled “What can Taiwan contribute to the UN Sustainable Development Goals 2030: An NGO Model for Rare Diseases,” but could not enter the venue due to China’s protest to the UN.

There are more than 6,000 rare diseases and more than 350 million people fighting against them around the world, Tseng said, but they are minorities in society and have not been focused on by the UN, which is why the committee’s launch is such a breakthrough for fighting against rare diseases.

“Taiwan is not a member of the UN, so we face a big challenge when we try to enter the UN headquarters,” Tseng said.

He said he had planned five ways to attend the meeting, after he was told by participants from other nations at a banquet held one day before the meeting that his participation might be blocked by China.

Tseng said he was aware that sharing the efforts for pushing legislation and policy to combat rare diseases in Taiwan might be viewed by China as a display of Taiwanese sovereignty, adding that it might also be upset because the foundation’s name has the word “Taiwan” in it, therefore the foundation had kept a low profile while preparing for the speech.

Following the incident, Tseng said the foundation has received numerous letters of solidarity, including a private letter from a top official at the US National Organization for Rare Disorders, who praised the foundation’s achievements that can be shared with the world and criticized barring Tseng from making the speech as a “disgraceful behavior.”

China has the largest cases of rare diseases in the world, so it should cross national and ethnic barriers to cooperate with other nations to help the patients, he said.

新聞來源：TAIPEI TIMES