2019 NEXT: Imagining the Future of Rare Disease

December 9, 2020

The pace of innovation continues to accelerate, thanks in no small measure to the growing sophistication of rare disease patients and their families. In NEXT: Imagining the Future of Rare Disease, we take a wide view of the rare disease landscape to look at how technology is improving the ability to understand, diagnose, develop treatments and deliver care to patients. Though most rare diseases remain without an approved treatment and most patients still face a protracted diagnostic odyssey, there is reason to believe dramatic changes are within our grasp. This report includes interviews with rare disease patient advocates, researchers, drug developers and others. The consensus is that if we are to fully realize the opportunities before us today, we must be innovative in the way that we approach business, finance, organizational development, delivery, regulation and access issues as well. Download the report to learn more about the findings.


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