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APARDO Surveys 2023

As advocates and representatives of rare disease organizations across the Asia Pacific region, your insights and experiences are invaluable in driving positive change. We are happy to announce two important surveys that have been launched to help us better understand and address the challenges faced by rare disease patients and their communities in accessing therapies and utilizing patient registries.

The surveys will be open until 13 September 2023. We kindly request you to complete the surveys at your earliest convenience.

1. Access to Therapies Survey: Timely and equitable access to therapies remains a critical concern for rare disease patients in the Asia Pacific region. The insights from this survey will aid us in identifying barriers, gaps, and best practices related to accessing therapies. By participating, you contribute to creating a comprehensive picture of the current landscape, and help in advocating for improved policies and support mechanisms.

Survey links are below:

or copy the following to your browser: 
English Version: 
Chinese Version:
Japanese Version:


2. Rare Disease Patient Registries in APAC Survey: Patient registries play a pivotal role in advancing research, understanding disease progression, and facilitating communication among rare disease stakeholders. This survey aims to gather information about the awareness, utilization, and effectiveness of patient registries in the APAC region. Your participation will aid in developing strategies to enhance the impact of patient registries and strengthen collaboration within our community.

Survey links are below:

or copy the following to your browser: 
English Version:

We encourage you to take part in both surveys and share your unique perspectives. Your input will shape the direction of our initiatives and contribute to the improvement of rare disease care and support in the region.

By collaborating and sharing your experiences, we can make a significant difference in the lives of rare disease patients. Thank you for your continued dedication to our mission.

Please feel free to reach out to for any queries.


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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