I feel like a broken record complaining about the snow. But for the past 6 weeks, it’s all anyone in Boston has talked about. And as ridiculous as it might sound to complain about something as basic as the weather,…
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Why Rare Disease Day Matters
Last holiday season, I organized a gift-wrapping fundraiser for the National Organization for Rare Disorders (NORD) at a bookstore. One of my “customers” jokingly said, “Rare diseases? Right, because you wouldn’t want to raise funds for any of those common…
Running Tales by Emma
This April, I will be running in the Boston Marathon raising awareness for Rare Diseases, a cause that I am very passionate about. In a previous blog post, my patient partner Emma and I shared our story of how we…
Posted in Patient Stories, Running Stories Tagged with: patient partner, rare disease day, rare diseases, running
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