pLOG

2026-01-13

PatientsForce Partners with the Rare Disease Foundation to Host the “Smile Ambassador” Handcraft Workshop Bringing Understanding into Everyday Life Through Companionship and Co-Creation

To deepen employees’ understanding of families affected by rare diseases and to translate corporate social responsibility into meaningful action, PatientsForce recently partnered with the Rare Disease Foundation to host the “Smile Ambassador” hands-on workshop. The event featured Jia-Zhen, a family member of a patient, who guided colleagues from the PatientsForce Group through a warm and meaningful creative experience. The atmosphere was heartfelt and welcoming, with hands-on creation serving as a bridge to connect understanding, companionship, and support.

“Because of love, I began creating; because I enjoy it, I continue creating.” Jia-Zhen shared that her journey into handcrafting began with her eldest daughter, who lives with the rare disease Alström syndrome. While caring for her children over the long term, Jia-Zhen served as a volunteer at her school. One day, her eldest daughter admired her younger sister’s beautiful hair accessories but, due to undergoing chemotherapy, had no hair to tie. This moment sparked a simple yet profound wish in Jia-Zhen’s heart—that when her daughter completed treatment, she could wear a hair accessory lovingly handmade by her mother.

Motivated by this hope, Jia-Zhen began attending handcraft classes with fellow volunteer mothers, unexpectedly embarking on a healing journey of her own.

As your learning deepened, handcrafting not only became an important way for Jiazhen to relieve stress but also gradually transformed into a medium for mutual growth between mother and daughter. Her eldest daughter, who has visual and hearing impairments due to illness, currently attends the Taipei School for the Visually Impaired. To provide her daughter with more opportunities for socialization and interaction as she enters senior vocational school, Jiazhen began bringing her along to sell their crafts at market stalls. By engaging with people in real-world settings, the daughter practices communication, independence, and self-confidence. In this process, the two have become partners, slowly exploring the things the daughter is capable of, interested in, and able to achieve.

In this activity, drawing on years of practical experience, Jiazhen designed several user-friendly handcrafting workshops closely related to daily life, including essential oil amulets, keychains, hair accessories, and ID badge holders. These activities allowed participating colleagues to experience the focus and healing power of handcrafting through relaxed interaction, while gaining a deeper understanding of the reality of living with a rare disease. Through the "Smile Ambassador" initiative, this event was more than just a handcrafting experience; it was a profound journey of dialogue and empathy. Moving forward, we will continue to collaborate with charitable partners to ensure that care is not just a slogan, but something that truly touches hearts and integrates into everyday life.

We welcome corporations to invite Rare Disease Smile Ambassadors to co-host corporate ESG seminars.

https://forms.gle/AtNRHipxvvHSdSEt7


Alstrom Syndrome is an extremely rare genetic disorder. As the disease progresses, it may affect vision, hearing, heart, kidney, and metabolic functions. Clinical presentations vary greatly among patients, and the caregiving challenges are long-term and complex, requiring greater societal understanding and support.。