Access to Therapies - Patient Group Survey
This survey has been created to provide a foundation of knowledge to inform a way forward in the Asia Pacific that improves access to therapies across the region. It is critical to understand the environment across the region and where common challenges are clear. APARDO is committed to working with our stakeholders to positively influence access to therapies in the Asia Pacific on a local and regional level.

The 2022 APARDO Conference brought together stakeholders in two rounds of discussions focusing on access to therapies. The discussions included sharing status of access to rare disease therapies, challenges in access, and strategies/actions for improving access. An update was also provided on the International Rare Disease Research Consortium and Rare Diseases International project and its three areas of focus: to identify barriers to access across jurisdictions, to compare access for specific diseases and therapies across health systems, and to set up pilots for “sustainable” access.

The roundtable discussions highlighted a number of areas of challenge and explored some strategies to improve access.

Access to therapies for rare diseases in most of the countries represented did not include many essential drugs available elsewhere, notably Europe and North America. The roundtable also confirmed that access (reimbursement) is better in high-income countries with more advanced health systems.

Regulatory approval of rare disease drugs varied across the APEC region, though few had accelerated approval processes, similar to those in European and North American countries. There is increasing interest and some effort towards collaboration across regulators, including proposals for harmonization, mutual recognition, coordination, and shared activities.

Your response to this survey will build a comprehensive picture of the Asia Pacific region and identifying information will not be released.

Thank you for your participation in this important survey.

Dr. Durhane Wong-Rieger
APARDO President
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