Kid Journalist Camp

As Rare Disease Day approaches, TFRD teamed up with The Reporter for Kids to hold a two-day “Interviewing Classmates with Rare Diseases – Kid Journalist Camp” on February 6th and 7th. The event invited eight children with rare diseases and 27 kid reporters to participate.

On the first day, Dr. Chen Yen-Lin, recipient of the Rare Disease Contribution Award, and Ms. Ruth Kuan-Ju Chen, Executive Director of TFRD, guided participants in understanding rare disease issues. Dr. Chen provided an accessible explanation of genetics, while Ms. Chen introduced the daily lives and care needs of rare disease patients. Ms. Serena Wu, founder of TFRD, also shared, “Rare diseases transcend nationality, gender, and age; they are an inevitable part of human evolution. We hope to inspire the next generation to become more aware of rare diseases so that care systems for rare diseases can be sustained and passed on.”

During the course, instructors from The Reporter taught photography techniques. Everyone carefully observed changes in lighting and captured creative photos amid laughter. In the kid press conference, the young reporters asked enthusiastic questions, showing curiosity and a spirit of exploration about their own genetic makeup.

The camp also included a special visit to the Rare Disease Welfare Center (RDWC). Participants toured the facility to observe its accessible design and participated in professional interviews, bridging the communication gap between the young journalists and students with rare diseases. While the young journalists gained valuable insight into the lives of students living with rare diseases, they also played a vital role in encouraging these often-reserved individuals to open up and share their personal stories.

Translator: David Lee (Becker Muscular Dystrophy)