Fostering Understanding Through Companionship and Co-creation
To deepen employees’ understanding of families affected by rare diseases and to put corporate social responsibility into action, PatientsForce recently partnered with the Rare Disease Foundation to host the “Smile Ambassador” handicraft workshop. The event specially invited Ms. Chia-Chen, a family member of a patient, to lead colleagues from the Tsai-Hung Health Group in a warm and meaningful hands-on creative experience. The atmosphere was heartfelt and uplifting, as participants connected through the act of making—transforming creativity into empathy, companionship, and support.
“Because of love, I began crafting; because of joy, I continue to create,” Chia-Chen shared. Her journey into handicrafts began with her eldest daughter, who lives with Alström syndrome, a rare disease. While caring for her child, Chia-Chen also volunteered at her daughter’s school. One day, her eldest daughter admired her younger sister’s beautiful hair accessories but could not wear any herself due to hair loss caused by chemotherapy. This moment sparked a simple yet profound wish: that once treatment was over, her daughter could wear hair accessories handmade by her mother. Motivated by this wish, Chia-Chen joined handicraft classes organized by fellow volunteer mothers—unexpectedly embarking on a deeply healing journey of her own.
As her skills developed, handicrafts became not only a vital outlet for stress relief, but also a bridge for shared growth between mother and daughter. Chia-Chen’s eldest daughter, who has both visual and hearing impairments due to her condition, currently attends the Taipei School for the Visually Impaired. Hoping to provide her with greater opportunities for social interaction and independence as she entered vocational education, Chia-Chen began bringing her daughter to participate in market stalls. Through direct engagement with the public, her daughter gradually developed communication skills, autonomy, and self-confidence. Along the way, the mother and daughter became true partners, discovering together what the child could do, wanted to do, and was fully capable of achieving.
For this workshop, Chia-Chen drew on years of hands-on experience to design a series of accessible, everyday handicraft activities—including essential-oil amulets, keychains, hair accessories, and ID holders. These activities allowed participants to experience the focus and therapeutic calm that crafting brings, while also offering a closer glimpse into the everyday realities of families living with rare diseases. The “Smile Ambassador” workshop was more than a creative session; it became a meaningful dialogue and an opportunity to cultivate empathy. Looking ahead, PatientsForce will continue to collaborate with public-interest partners, ensuring that care and compassion go beyond slogans and truly take root in daily life.
Companies are welcome to invite Rare Disease Smile Ambassadors to co-host corporate ESG talks and activities.
Registration link: https://forms.gle/AtNRHipxvvHSdSEt7
Alström syndrome is an extremely rare genetic disorder that may progressively affect vision, hearing, cardiac, renal, and metabolic functions. Clinical manifestations vary widely among patients, and the challenges of long-term care are both complex and enduring—making societal understanding and support all the more essential.
