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APARDO Surveys 2023

We have launched two important surveys to help us understand and address the challenges faced by rare disease patients and their communities in accessing therapies and utilizing patient registries.


The surveys are open to everyone.

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.

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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.

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English Version: 
Chinese Version:
Japanese Version:


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.


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English Version:

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