44th Social Education Contribution Award

【Awards】TFRD Receives 44th Social Education Contribution Award

 “Don’t ignore them because of their rarity. Rare disease patients bear the consequences of the inevitable risks from human heredity. Creating a rare disease friendly environment is our mission and objective.”

That is not just a slogan, but the belief behind the Taiwan Foundation for Rare Disorders’ (TFRD) effort in creating a rare disease friendly environment.

The continuing effort for more than ten years has finally been recognized by the committee of the Ministry of Education Social Education Contribution Awards.

The award ceremony was held at the National Chiang Kai-shek Memorial Hall on December 5.

This year the committee received 106 applications. The awards were given in three categories with one Lifelong Contribution Award, 15 Individual Awards and 16 Group Awards. The Group Award to the TFRD was received by Mr. Yang Yong-xiang, deputy executive director, on behalf of the TFRD.

Through print media, television, radio and the Internet, the TFRD has been able to promote rare disease social education to a wider range of audiences.

In addition, the TFRD has been organizing professional training sessions to maintain high service quality.

The TFRD also encourages postgraduate students in Taiwan to study and conduct research on rare diseases.

The TFRD commissioned the Department of Medical Genetics at National Taiwan University Hospital to create “Genes-at-Taiwan -- Taiwan Rare Disease Database,”the most complete online Chinese-language rare disease database.

With the help of published large-sized picture books, illustrated books and videos, the TFRD has been visiting different schools to promote rare disease awareness through storytelling, puppet skits and games.

To help cultivate rare disease patients’ and their families’ interest in art, the TFRD has formed a choir and run painting, writing and video creation classes, and a “performing Workshop.” The workshop and classes serve as a way to help rare disease patients develop talents and skills to live independently.

These innovative and diverse ways of promotion and education help raise public awareness of rare diseases.

The TFRD dedicated the award to all those who pay attention to and support rare disease patients and promised to stay committed to their ideals and mission.

Translator: Jonathan Wilson (Bruton disease), Reviewer: Alex Chiang