Rare disease communities in China help shape AI and open-source tools around everyday needs that standard products overlook
Global Times
12th November 2026
Rare disease communities in China help shape AI and open-source tools around everyday needs that standard products overlook
By Shan Jie
For Aili, the starting point for innovation was a cup, a pair of chopsticks and a computer keyboard - everyday objects that had become difficult to use as his muscles weakened.
Living with facioscapulohumeral muscular dystrophy (FSHD), Aili wanted assistance with movements that other people take for granted. When he brought those difficulties to science and technology educator Sun Dawei and his students, the discussions gradually became a design brief.
An early prototype combined a work glove, 3D-printed components, hot glue and elastic bands. Aili tried it and reported that it offered some assistance. He also identified problems that the team would need to fix.
Over several versions, the developers reconsidered the glove's support, ventilation, appearance and fit. Patients' experiences helped determine which features mattered and which designs needed changing, according to accounts shared at a recent rare disease innovation event in Hangzhou, East China's Zhejiang Province.
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