CHINA BLOCKS TAIWAN RARE DISEASE EXPERT AT NGO MEETING |陸方施壓 罕病基金會聯合國演說受阻

The Taiwan Foundation for Rare Disorders was invited to participate in a meeting of the Global Gathering for Rare Diseases, which is a newly-established non-governmental United Nations-affiliated group. TFRD Chair Dr. Tseng Min-chieh was to have made an opening address. However, China protested and half an hour before the event started, Tseng was informed that he would not be able to enter the United Nations venue and make his speech. Just before the the Global Gathering for Rare Diseases inaugural meeting at the United nations building in New York, Taiwan's Dr. Tseng Min-chieh Chair of the Taiwan Foundation for Rare Disorders was suddenly informed that he would not be able to give his opening address or even enter the building to participate in the meeting, due to a protest from China. ==CHEN KUAN-JU Acting Chief Executive Officer TFRD== The reason was because China protested and did not want our representative to appear at the meeting. The meeting's Chair was very regretful because the Taiwan Foundation for Rare Disorders has been operating for 20 years now. The TFRD said it received the invitation from the UN-affiliated group in September asking the TFRD to participate in the November 11 inaugural meeting of the newly-established Global Gathering for Rare Diseases. The TFRD Chair and founder Dr. Tseng Ming-chieh was also invited to give an opening address. At the last minute, this was squashed by China's protest, barring Dr. Tseng from even entering the building and attending the meeting, let alone give an address on his 20 years of professional experience in the field. ==WANG YING-WEI Dir-Gen. Health Promotion Administration MOHW== For this sort of address to be squashed really highlights China's rudeness. This Foundation has been working in the field for 20 years and looking after vulnerable groups, Taiwan has done this for many years with a lot of success. After the incident, the Foundation emphasized that it has been established for 20 years and served over 10,000 families with 248 types of rare disease and would continue to work hard to do so. Hopefully one day it would be able to share the fruit of its labor with others in the world who could benefit from its help and experience. TRANSLATED BY：CLARE LEAR 台灣罕病基金會，原本受邀參加、在美國紐約，新成立的、聯合國「罕見疾病、非政府組織委員會」的開幕典禮，並且要發表專題演說。但沒想到開幕前半小時，因為中國嚴重抗議，最後，台灣代表，無法發表演說。 就在聯合國大會開幕前半小時，大會主席突然宣布，來自台灣的罕見疾病組織代表、也就是罕病基金會董事長曾敏傑，因為中國提出嚴重抗議，因此確定無法代表台灣上台發表專題演說，而且我方代表連入場都遭到阻撓。 ==罕見疾病基金會代理執行長 陳冠如== 主要是中共的一個抗議 然後呢 希望我們 不要代表出席這個會議 那大會主席也非常的遺憾 因為台灣罕見疾病基金會 其實在這20年來步步為營 罕病基金會表示，今年九月就接到聯合國邀請函，希望基金會能參加這個月11號，在美國紐約新成立的、聯合國「罕見疾病非政府組織委員會」開幕典禮，同時希望以台灣投入病友服務的寶貴經驗，提出具體建議，沒想到最後關頭、還是遭到中國政治打壓，讓演說生變，非常遺憾。 ==國健署長 王英偉== 這樣的一個出席被打壓 也是凸顯對方的無禮 事實上罕病基金會 本來對所謂的弱勢族群的關心 台灣在做這個部分 是做了很多年 而且非常有成果 雖然無法進入聯合國演說，不過罕病基金會強調，創立近20年來，已服務一萬個罕病家庭，共發現248種罕見疾病，未來還會持續努力，希望有一天、能讓全世界看到台灣的罕病生命、是如何努力發光發熱。 記者 賴淑敏 陳立峰 台北報導