Over 30 Million Americans Affected by Rare Diseases: A Call for Action
More Than 30 Million Americans Affected by Rare Diseases
The National Organization for Rare Disorders (NORD) has recently brought to light the pressing issue of rare diseases affecting more than 30 million Americans. Less than 5 percent of the more than 10,000 recognized rare diseases have approved treatments, illuminating a critical gap in healthcare that necessitates increased research, policy support, and innovation.
Families searching for diagnoses often face prolonged hardships, with research indicating that it can take anywhere from five to seven years to obtain an accurate diagnosis. This extended period is rife with medical ambiguity, misdiagnoses, financial burdens, and social isolation, which further complicate their journey. In fact, the National Center for Advancing Translational Sciences (NCATS) approximates that direct medical expenses associated with rare diseases can reach up to $400 billion annually, a staggering figure that rivals costs incurred in treating conditions such as cancer and Alzheimer’s disease.
As the official U.S. sponsor of Rare Disease Day, which is observed globally via EURORDIS-Rare Diseases Europe, NORD is rallying communities across the nation to
Topics Health）
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