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Art and Advocacy to Rise Above Isolation of Diagnosis

Ali SP, was diagnosed with a rare auto-immune disease that can be painful and isolating. She uses art to express what is difficult to describe in words, and has been recognized in the 2021 Rare Artist Competition of the EveryLife Foundation for Rare Diseases. She has risen above isolation by advocating with many other rare disease advocates to bring awareness to legislators on the state and federal level about how they can help the more than 30 million people living in the U.S. with rare diseases. She participates in Rare Disease Week on Capitol Hill, Rare Across America to bring awareness to issues relating to Newborn Screening, and helps legislators understand how to support the development of orphan drugs for rare diseases.