Translation Club Gives Tour at RD Welfare Center

From March to June in 2025, members of the translation club gathered together on weekends intensively to rewrite and record picture books of rare disease in reader’s theater format. Between rewrites and recordings, club members gave an English tour to welcome visitors from the Netherlands to the foundation’s fully accessible, inclusive, and welcoming environment of the Rare Disease Welfare Center in Guanxi, marking an important milestone in the journey of learning.

With great anticipation and excitement, members of the English Translation Club from TFRD gathered together at the Rare Disease Welfare Center April 19-20, 2025 to present their debut of an all-English guided tour specially prepared to welcome guests from the Netherlands.

Accompanied by Professor Kent Wang of Soochow University, club members took nearly eight weeks on drafting scripts, assigning jobs, and taping video rehearsals to ensure that the tour would be professional and unforgettable.

After a quick on-site rehearsal, the long-awaited meet-up with the foreign volunteers from the Netherlands had begun. Even at their debut, members of the translation club stepped forward without hesitation. In fluent English and with great confidence, they introduced the various features of the Rare Disease Welfare Center; the Genetic Education Center, accessible bathing facilities, inclusive fitness classrooms, and the greenhouse.

Special mention was made to Dutch visitors about the Pompe Disease, so named after Dutch pathologist Dr. Pompe, and Taiwan Academician Dr. Chen Yuan-Tsong for his invention of the treatment of the disease and the impact it made globally.

A member of the club, a patient of Mucopolysaccharidosis (MPS) himself, standing in front of the display board of rare diseases, cited his own condition as an example to share the daily struggles and challenges he experienced.

Another member, patient of Hereditary Spastic Paraplegia (HSP), guided guests from the Netherland through a walking simulation. Following her footsteps, visitors had their first experience of the physical restraints TFRD patients are faced with.

Throughout the entire tour in English, Yu Sheng Lin, a professional videographer and patient of Spinal Muscular Atrophy (SMA), captured most meaningful interactions between members of the English club and guests from the Netherlands. Dutch visitors listened intently while club member responded to every question in fluent English and in full confidence. Members of the TFRD Translation Club have surpassed a new milestone. They built the international connection, helping Dutch volunteers better understand about rare diseases. It was truly a heartwarming and unforgettable cultural exchange.

“At Taiwan Foundation for Rare Disorders, the first thing you would notice are people, who, on the surface seemed just like anyone else. However, volunteering there taught me that their stories reveal invisible rare disorders that affect their lives in drastic ways. I used to think the most important discoveries happened in labs, as I’ve already spent years in the lab doing experiments. Labs are important and rewarding work, but what gives meaning and purpose to that work, for me, is meeting the people that our science is trying to help. These human discoveries gave my research value and motivation, as I found purpose. I am now motivated to pursue projects that matter, especially for those whose conditions are often overlooked, just like rare disorders,” reflected Maxine, a TFRD volunteer who participated in the entire two-day exchange.

The Dutch volunteers accompanied by members of the Translation Club through this overnight tour spent memorable time at the Welfare Center. They joined in DIY activities and shared mealtimes together. The Welfare Center was filled with the sounds of singing, chatting, and laughing. Everyone forged heartfelt connections in an experience that will not be forgotten.

Since the establishment of the TFRD English Translation Club in 2018, and with the help of experienced instructors, our talented club members and patients of rare disorders have overcome the limits of their physical conditions and completed the translation of more than one hundred articles on general knowledge of rare diseases. The TFRD English Translation Club is reaching out to international audiences allowing them to learn more about rare diseases in Taiwan. The debut guided tour was an important milestone of TFRD, and still more surprises are to be continued.

Translator: Newny Chiang (NMOSD)
Reviewer: Kent Wang