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What does it mean to have a rare disease? It might mean…. 🦓 It takes longer to get properly diagnosed. 🦓 It’s frustrating to have to explain your disease to friends and loved ones. 🦓 You need to advocate for yourself a little louder. 🦓 You become an expert on your disease, sometimes even knowing more than your own doctors. 🦓 You have to travel to see a specialist. 🦓 Your insurance coverage is complicated. What does having a rare disease mean to you or your loved ones? Show your stripes - a
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