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Explaining Pompe disease to my son’s kindergarten class

My 6-year-old son, Cayden, and I plan to put together a small presentation about his infantile-onset Pompe disease for his kindergarten class later this week, in recognition of Rare Disease Day on Feb. 29. Unfortunately, he’ll have to miss school that day because he’s scheduled to get his…

My son’s respiratory equipment is being discontinued. What next?

Philips, a company that manufactures and sells respiratory equipment to a big portion of the United States, recently posted a statement saying it was discontinuing “the sale of hospital ventilation products, certain home ventilation products, portable and stationary oxygen concentrators, and sleep diagnostic products.” This change was a shock…