By Marla Munro and Kathleen Bogart Globally, there are more than 300 million people who have one of the 7,000 known rare diseases (Nguengang Wakap et al., 2020). In the United States, any disease affecting fewer than 200,000 people per year is considered rare . People with rare diseases experience many of the same challenges who those with more common chronic illnesses deal with, but they also face additional barriers and stigma due to how rare their conditions are. Some of these unique challenges include having significantly delayed diagnosis (averaging seven to nine years), receiving multiple misdiagnoses, and lacking access to information about or treatments for their conditions (von der Lippe et al., 2017; Zhu et al., 2017). People with rare diseases often face social and psychological challenges, such as isolation because they do not know anyone with their disease (Anderson et al., 2019; Bryson et al., 2021) and a higher risk of anxiety and depression (Bogart & Irvin, 2017). In a new study published last week, we found that people with rare diseases also face significant stigma and ableism (Munro, Cook, & Bogart, 2021). Rare disease facts. Learn more at rarediseases.org Source: Used With Permission From National Organization for Rare Disorders… Read full this story
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