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The Awakening of Rare Diseases in Latin America [[link removed]]
Tuesday, Aug. 9 // 10–11:30 a.m. (ET)
Rare diseases [[link removed]] are primarily genetic disorders or medical conditions that individually afflict a small percentage of individuals but in aggregate affect about 350 million worldwide and about 40 to 50 million in Latin America. Across the Hemisphere, countries define rare disease based on different criteria. The lack of a unified definition, paired with limited public health policies to address rare disease needs and other challenges, obscures the standards for research, access to diagnosis, and management, which often do not meet patient needs. As a result, diagnosis may be elusive, and treatments [[link removed]] can be practically and financially out-of-reach for many patients, particularly in countries where public health policies overlook rare diseases.
There are some 7,000 conditions [[link removed]] generally recognized as rare diseases. Worldwide, these disorders affect about 350 million people, 40 to 50 million of whom reside in Latin America. Although increasing awareness of rare diseases has pushed several countries in the Americas to approve laws that ensure access to diagnosis and management for rare disease patients, many lack the resources and capacity to provide adequate care. Moreover, constraints on public health budgets generate pressure on health and finance ministries across the hemisphere in the context of spending on orphan drugs and other treatment options. As a result, public health officials are faced with difficult decisions as they seek to treat both rare and widespread diseases, which impact their populations.
In order to highlight the importance of early diagnosis and treatment of rare diseases in Latin America and the policy challenges facing policymakers seeking to respond to this need, the Wilson Center’s Mexico Institute and the Americas Health Foundation (AHF) will convene an expert panel.
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Still to Come this Week
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China Fast-Tracking High-Speed Trains at Home and On the Belt and Road [[link removed]]Wednesday, Aug. 10 // 9–10:15 a.m. (ET)
In this panel, speakers will explore the successes and challenges facing China's high-speed railway in balancing economic growth with financial, environmental and labor concerns at home and in Southeast Asia.
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Energy Security Outlook and Japan-U.S. Cooperation [[link removed]]Wednesday, Aug. 10 // 9–10:15 a.m. (ET)
Join us for a discussion on how to reconcile the needs of energy security with that of environmental resilience, and the role that both Japan and the United States can play in promoting bilateral and multilateral cooperation to develop the technology and infrastructure to meet the future energy needs of the Indo-Pacific.
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Brown Capital Management Africa Forum High-Level Meeting: Strengthening the Role of African Sovereign Wealth Funds in the International Financial System: Interplay between Policy, Governance, and Sustainability [[link removed]]Thursday, Aug. 11–Friday, Aug. 12 // 8:30 a.m.–5:30 p.m. (ET)
This high-level meeting will convene 16 African countries, including the heads of sovereign wealth fund CEOs as well as deputy ministers, US officials, private sector leaders, and representatives from US and international, financial, and development institutions and initiatives to discuss: the role and governance of sovereign wealth funds in Africa; ways for achieving profitability while promoting social responsibility and environmental sustainability; avenues for building strategic intra-African and international partnerships in the COVID-19 era and beyond; and ways for strengthening the role of sovereign wealth funds in the international financial system.
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