A never-ending hunger

Seeing their children tuck into their food usually brings a smile to a mother’s face. Not, though, to Paweerisa Assawasoontornnate. Her boy is suffering from a rare disease caused by…

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About 3.5 million Thais who suffer from rare diseases have no access to treatment

Over 400 million people around the world suffer from rare diseases. Approximately 3.5 million of them are Thai, while only some 20,000 have access to treatment. It remains one of…

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The photo taken on October 21, 2021 shows Xu Wei holding his son Xu Haoyang, diagnosed with Menkes syndrome, after extracting urine from his bladder for testing at a hospital, at their home in Kunming in southwestern China’s Yunnan province.

The Chinese dad making medicine to treat his dying son

Two-year-old Haoyang has likely just months to live — but the only medicine that can help his rare genetic condition is not found anywhere in China and closed borders due…

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Health system improvements to ensure best treatment of rare or extreme diseases

The National Health Security Office (NHSO) is working on a system to ensure access to health services for patients afflicted with rare and very rare diseases. The NHSO board, chaired…

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