1 day Event for Medically Underserved RD Patients

Adhering to its founding mission of supporting healthcare-disadvantaged groups, TFRD collaborated with the Taiwan Organization for Disadvantaged Patients (TODP) to hold the "2025 One-day Event for Medically Underserved Patients with Cross-Category Rare Diseases" at Taoyuan's Power Farm on June 28. The event brought together 91 participants, including 28 households—comprising 83 patients and family members spanning 26 disease categories—alongside dedicated staff and volunteers.

The event centered around a rural experience, with participants personally completing every step—from stacking bricks for the kiln, lighting the fire, placing ingredients inside, to sealing the kiln. While the excited kids gathered around the kiln, the adults rekindled childhood memories through hands-on crafting. Before the kiln could be unsealed, participants joined hands in crafting plant-dyed fabrics, using natural materials to create beautifully unique, one-of-a-kind pieces. The lemon agar jelly DIY session proved especially captivating, as everyone delighted in rubbing the agar seeds and eagerly waiting for the jelly to set. Laughter and joy filled the room—because what they were shaking in their hands was more than just agar jelly; it was the warmth and connection of family bonds.

In addition, the event included self-introductions and experience sharing sessions for patients and their families. This interactive format helped participants build emotional connections, discover shared experiences, and gradually overcome feelings of isolation and alienation. TODP Chairman Tseng Min-chieh also joined the gathering to offer encouragement: “Though the journey with illness is fraught with challenges, no obstacle is insurmountable when we support one another and walk together.”

Translator: David Lee (Becker Muscular Dystrophy)