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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
Economist White Paper

World of Promise Podcast

This podcast discusses the findings of the Economist Intelligence Unit report on rare diseases in Asia Pacific, and features an interview with the report’s editor, Jesse Quigley Jones.

Listen to the Podcast

The Findings


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

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.

Animation Video

This 2-minute animation highlights the findings of the EIU.

Snapshots by Economy

The EIU white paper was informed by an online survey of 500 healthcare professionals – 100 in each of the five studied economies; Australia, China, Japan, South Korea and Taiwan. For each of these markets, the EIU developed an economy ‘snapshot’, highlighting market-specific findings from the survey. For more information, please refer to the respective market snapshot papers.

More Information by Economy

* 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.