Taiwan and Brazil Exchange Information about RD

There were five members of Brazilian Congress visited Taiwan from July 22 to 25. One of the Congress members, Carla Zambelli, is the vice chairperson of the “Rare Diseases Front Line” in Brazilian Congress. In addition, she has been committed to taking care of patients suffering from rare diseases for a long time. Therefore, under the arrangement of the Ministry of Foreign Affairs, the government officials accompanied them to TFRD on the morning of July 23, hoping to let them know the relevant policy of Taiwanese Rare Diseases.

It's worth mentioning that Carla Zambelli was the only woman in the delegation. She received a Brazilian Patriotic Badge for fighting political corruption and got an honorary citizenship award from Sao Paulo State Government. Evidently, she not only cares people with rare diseases but fights for justice.

TFRD realized the current situation of rare diseases patients in Brazil from the exchange meeting. In Brazil, rare diseases had been defined in 2014. Rare diseases mean that prevalence rate of any disease is lower than 65 in 100,000 people. There are almost 13 million patients suffering from rare diseases in Brazil. However, there are only 14 kinds of medicine that have been released and only 12 genetic counselors in the country. As a result, it was quite difficult to receive genetic counseling for those patients, and it might even take two years to wait for counseling. Moreover, medicine of treating rare diseases was overpriced. Thus, Brazilian officials would develop generic drugs to cure them.

When the founder and CEO of TFRD were making a brief introduction, the officials listened carefully and discussed actively in Q&A session. It is said that these officials are conscientious, they would live stream after each meeting to tell Brazilians what they had seen, what they had heard and what Brazilians should do or improve to connect to the world. It made this exchange meeting more meaningful to Brazilian officials and TFRD.

Translator: Ivy Tsai (SMA), Reviewer: Linda Tsai