Donna Appell, President and CEO of the HPS Network, and Ashley Appell, an adult with HPS, presented Grand Rounds to pediatric and genetics staff at New York’s Metropolitan Hospital on Friday, June 2, 2017. Donna Appell explained the basics of Hermansky-Pudlak Syndrome (HPS), caring for patients with HPS and how to identify a patient with HPS who might not be aware they are affected by the syndrome. Ashley Appell answered questions from those in attendance about her experiences living with HPS every day. “Metropolitan Hospital did an awesome job with Rare Disease Day last year and that is how we connected with them,” said Donna Appell, “We are looking forward to working with them on Rare Disease Day in 2018.”

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