First National Rare Disease Patient Club Launched in Vietnam

Cara Hesse | January 14, 2015

The rare disease community in Vietnam achieved a significant milestone in November with the launch of the country's first and only Rare Disease Patient Club by the National Hospital of Pediatrics (NHP). In a country of more than 90 million people, the NHP is the only hospital that provides treatment for Lysosomal Storage Disorders (LSD) in the north. The Rare Disease Patient Club is headed by Mrs Cung Thi Thanh Huyen, mother of a young Gaucher patient.

“As a mother of a rare disease patient, I definitely know well the difficulties and the feelings that we, their parents, have suffered and will have to suffer,” said Mrs Huyen in a moving speech. “The Rare Disease Patient Club will be the place where we can meet and share difficulties and feelings. We can also share information and experience not only about our children’s diseases, but also to parents whose children just diagnosed with a rare disease on how to take care of them.”

About 30 patients and their families attended the launch event which was followed by an Educational Forum for Families and Caregivers on LSD. Speakers included the NHP’s own Dr Vu Chi Dung as well as guests from Taiwan – Dr Shuan-Pei Lin from Taipei MacKay Hospital and Ms Virginia Tsai, President of Taiwan MPS Society. (Photo: Dr Shuan-Pei Lin from Taiwan’s Taipei MacKay Hospital interviewed by the Vietnamese media)

Congratulations to the rare disease community in Vietnam for this significant achievement!

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