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Last access:  14 September 2020, 12:15 AM SGT

The COVID-19 pandemic has had significant health, social, and economic consequences internationally. While the pandemic has direct implications on infected patients and families, there is a need to examine the pandemic’s effect on patients with non-COVID-19-related diseases. This study examines the impact of the COVID-19 pandemic on 272 rare disease patients with 89 distinct rare diseases in Hong Kong using a cross-sectional online survey between April 10 and April 29, 2020 from the patient and caregiver perspective.

The Asia Pacific Alliance of Rare Disease Organisations highlights the main findings from the first study on the impact of Covid-19 on the functioning of rare disease organisations in the Asia Pacific. The objective was to understand the impact of the pandemic on rare disease organisations and patients, organisational challenges in delivering support to members, and explore opportunities for improvement in preparedness level for both patients and patient organisations in the future.


Last access:  15 July 2020, 11:26 AM SGT

Group Calls on Government to Respond Efficiently and Effectively
A survey press released and published by Rare Disease Hong Kong 


Last access:  5 May 2020, 11:16 PM SGT

Around the world Novartis teams, together with their partners, are developing patient-oriented digital solutions including:

  • Working with government, health authorities and pharmacy groups to extend repeat and refill prescriptions or creating access to online drug refill

  • Integrating and scaling-up existing programs for home delivery, home care and call centers

  • Delivering online disease awareness education


If you have any questions or would like more information about rare disease in Asia Pacific, our advocates around the region will be happy to help.

Email Us

Phone:  (65) 9385 5053

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