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Source: Media Outreach

Knowledge of rare diseases among healthcare professionals is lacking:
o 34% do not know if there is a definition for rare diseaseso 35% do not know if there is a national rare disease policy14% of healthcare professionals report never encountering a rare disease patient
Better coordination between disciplines and across borders is needed to ensure every rare disease patient receives the best care available

HONG KONG, CHINA – Media OutReach – 16 July 2020 – There are between 6,000 and 7,000 known rare diseases, which share little in common beyond their infrequency. This represents both a medical and policy challenge, often resulting in those with rare diseases receiving suboptimal support. While individual diseases may be rare, their collective burden is significant. The Economist Intelligence Unit estimates that around 258 million people across Asia-Pacific are affected by rare diseases. While rare diseases are increasingly moving up the health policy agenda in Asia-Pacific, more work is needed to provide people with rare diseases the support they need.

The Economist Intelligence Unit report, Suffering in silence: Assessing rare disease awareness and management in Asia-Pacific, sponsored by CSL Behring, describes healthcare professional’s experiences around rare diseases–measured in a regional survey of over 500 people–and reviews policy responses in five economies: Australia, China, Japan, South Korea and Taiwan.

The research found that healthcare professionals do not feel adequately equipped with the knowledge or tools to diagnose and manage rare diseases across all economies, and obtaining a correct diagnosis within a reasonable timeframe is the greatest challenge. Fragmentation of care is another critical issue. Healthcare professionals reported that only one-third of rare disease patients receive the best-available care, and lack of clinical practice guidelines, regulatory-approved medicine and funding for testing or treatment were the reasons cited for why not. Finally, the provision of support for quality of life, autonomy and rights was the weakest aspect of care provision, according to survey respondents.

Policy responses to more comprehensively address rare diseases are emerging across the region, but are hampered by lack of comprehensive data on the incidence and prevalence of rare diseases and a lack of a unified rare disease definition. Meanwhile, the establishment of national undiagnosed disease programmes in some economies has demonstrated the power of increased collaboration and a multi-disciplinary approach to addressing the core issues around diagnosis and patient care. Currently-achievable or near-term goals identified by the research include better collection and use of data, enhanced education, broader dissemination of available knowledge and integration of patient care through increased national or international collaboration.

Jesse Quigley Jones, editor of the report said: “Despite the clear challenges in addressing rare diseases in Asia-Pacific, there appears to be slow and steady progress towards coordinated and integrated care. Adopting a holistic policy approach that makes provision for both the medical and social needs of the rare disease community–and doing so in collaboration with patient representatives–has the potential to make a real difference in this area.”

The full report, economy snapshots and videos are available here
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