Rare disease communities in China help shape AI and open-source tools around everyday needs that standard products overlook

Detailed summary

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.

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Participants enjoy music together at the "Rare Beyond Bounds" open-source innovation carnival in Hangzhou, East China's Zhejiang Province, in October 2026. Photo: Courtesy of Beijing Illness Challenge Foundation

Guests visit a school in Hangzhou, East China's Zhejiang Province, to learn about the use of AI in special education on June 7, 2026. Photo: VCG

Participants exchange ideas at the "Rare Beyond Bounds" open-source innovation carnival in Hangzhou, East China's Zhejiang Province, in October 2026. Photo: Courtesy of Beijing Illness Challenge Foundation

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