| 27 February 2017

Important Meeting Marks Rare Disease Day in Hong Kong

Report by KP Tsang

As a signatory event for World Rare Disease Day 2017, Hong Kong Alliance for Rare Diseases hosted a Symposium with the theme of "How Should Health and Social Welfare Systems Respond to the Needs of Patients with rare Diseases" on 25 February, 2017 (Saturday). Key speakers were invited to present on patients' registry and how should the systems respond to patients. Patient leaders and care givers served as panelists in two concurrent workshops which covered a number of rare diseases e.g. Rett Syndrome, Spinocerebellar Ataxia, Angelman Syndrome, Pompe Disease, Melanoma, Tuberous Sclerosis Complex, Skeletal Dysplasia, Spinal Muscular Atrophy, etc.. Over 200 guests and representatives from Government bureau and departments, Members of Legislative Council, Hospital Authority, medical schools and colleages, social welfare service providers, patient groups, pharmaceutical industry will attended the event.

 

 

 

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