Latest Statement: TFRD Fails to Attend UN Meeting

Latest statement: TFRD fails to attend UN meeting due to CCP’s protest

Originally, NGO Committee for Rare Diseases specially invited Prof Min-Chieh Tseng, the co-founder of TFRD, Mr. Terkel Anderson, the chairperson of EURORDIS, and Ms. Abbey S. Meyers, the former chairperson of NORD to give speeches at the inaugural meeting. Prof Min-Chieh Tseng would take “What can Taiwan contribute to the UN Sustainable Development Goals 2030: Taking an NGO for Rare Diseases as an Example”as the topic of his speech. In addition to reviewing the development of rare diseases in Taiwan, he also would like to share valuable experience of long-term service from TFRD to make specific suggestions for the promotion of rare diseases in the future of the UN.

Regrettably, 9:30 a.m. on the 11th, New York, Prof Min-Chieh Tseng received a message from Robert Hejdenberg, the chairperson of Agrenska that TFRD couldn’t participate in the meeting because of the CCP’s intervention.

In fact, TFRD received the invitation in mid-September. Considering that it is a highly sensitive issue, TFRD had always kept a low profile at preparation work to avoid pressure from the CCP. Unfortunately, the intervention still occurred. TFRD deeply regretted and realized Taiwan’s difficult international situation. Nevertheless, TFRD is very grateful for EURORDIS and many international partners’ unremitting efforts. TFRD will not be discouraged by the setback, and will continue to provide services for patients with rare diseases in Taiwan, take care of more rare disease patients' families, and continue to promote international exchanges in the future.

Mr. Yann Le Cam, the CEO of EURORDIS wrote to Prof Min-Chieh Tseng to express his regret after the committee. The text of the letter is as follows:

Dear Min-Chieh,
We are all outraged and feel awful for today's difficulties. 
Cyril Ritchie, Chair of CoNGO made a strong statement on this, public and on line.
Kind regards, Yann

Cyril Ritchie, the president of Conference of Non-Governmental Organizations in Consultative Relationship with the United Nations, made the following statement at the round table forum meeting:

I refer to Professor Min-Chien Tseng, founder of Taiwan Foundation for Rare Disorders and dean of Social Sciences at National Taipei University. ConGo is by definition a proponent of freedom of information, freedom of expression, and open exchange of scientific and professional knowledge. The prevention of Prof. Tseng from Taiwan from attending today’s ConGo meeting runs directly counter to these fundamental principles, principles that are clearly within the values proclaimed in United Nations charter. That is the end of the statement for the record.

Translator: William Luo (MPS), Reviewer: Linda Tsai