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The Black Women’s Health Imperative (BWHI) recently created a Rare Disease Diversity Coalition focused on reducing racial disparities in the rare disease community.

Getting a timely and accurate diagnosis for a disease that few people — sometimes even physicians — have heard of is challenging on its own merit. But people of racial and ethnic minorities must frequently overcome even greater challenges.

The National Institutes for Health estimates that between 25 million and 30 million Americans have a rare disease. Because of their relative obscurity, accurate diagnosis of these diseases often takes longer than in more common disorders. Estimates indicate that patients may wait nearly five years and see an average of seven different doctors before their condition is accurately diagnosed.

Read more here.

Post by Gaucher Disease News
June 10, 2020