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Suffering in Silence

CSL Behring commissioned The Economist Intelligence Unit (EIU) to explore the state of rare-disease understanding and management throughout the Asia-Pacific region

The Economist Intelligence UnitThe result is a white paper called ‘Suffering in Silence: Assessing Rare Disease Awareness and Management in Asia-Pacific’ which takes a deep dive into the realities facing patients living with rare diseases across five APAC economies.

Despite their classification as ‘rare’, these diseases affect an estimated 258 million people in APAC, *1,2 approximately 50% of whom are children. This represents a significant disease burden that cannot be ignored. The report seeks to understand the rare disease landscape including complexities for healthcare professionals (HCPs) and governments in addressing the needs of this diverse group, as well as the perceived challenges facing rare disease patients.

Meet the People Behind the Findings

"The EIU report clearly highlights a number of areas where improvements are needed but we need multi-party engagement to make a difference for these patients,” said Dr. Ritu Jain, President, Asia Pacific Alliance of Rare Disease Organization.

Hear more from Dr. Jain, HCPs and patients with a rare disease

Australia Snapshot

When asked to nominate one action that should be taken to improve the lives of rare disease patients in Australia, the most common responses included: increased awareness and education for both physicians and the general public; and increased financial support for treatment, management that preserves patient function and palliative care.

EIU White Paper

The white paper identifies three high-profile priorities for rare disease patients. These are: achieving a correct and timely diagnosis; improved financial assistance and greater consideration for non-medical support.


Rare disease affects an estimated 258 million people in the APAC region; 50% of them are children.

* Based on the EIU estimation that 6% of the Asia-Pacific population of 4.3 billion is affected by a rare disease
1 The Economist Intelligence Unit Limited. Suffering in silence: Assessing rare disease awareness and management in Asia-Pacific. 2020.
2 United Nations Population Fund. Asia & the Pacific. Population trends. Available at: Accessed May 2020.