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Rare diseases affect an estimated 30 million people in the United States, or nearly 10% of the population. To better understand how individuals with rare diseases and their families are impacted by the COVID-19 pandemic, the #NIH-funded Rare Diseases Clinical Research Network developed an online research survey. This survey will provide an opportunity for rare disease patients and caregivers to share their experiences and help researchers learn more about community needs during a time of crisis.
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