Meme: Taking Care of Yourself
It's not selfish to take care of yourself. It's good for you and it's good for your loved ones. It's hard to be there for other people when you haven't…
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Meme: Taking Care of Yourself
Editor’s Choice: Love and Other Drugs
Welcome back to Editor's Choice Patient Worthians! This week, a PW Contributor told a love story about how her husband's bipolar disorder helps her manage her rare disease. We also have an…
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Editor’s Choice: Love and Other Drugs
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A Special Day for Raising Hunter Syndrome Awareness
Every week, my son’s principal sends a voicemail to parents highlighting the week’s news and activities. At the end of the message, she signs off with a reminder to “Be…
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A Special Day for Raising Hunter Syndrome Awareness
Changing the Use of “Special Needs”
From the perspective of a mother with a child who has a serious and rare medical condition, Pfeiffer syndrome. There are many reasons why the term “special needs” can have…
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Changing the Use of “Special Needs”
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The SMA Miracle: First Ever Treatment Approved for Rare Disease
Imagine walking through the woods at night. You have no lantern and no flashlight—not even a match. The darkness is suffocating, and you’re terrified. But you keep blindly stumbling. It’s…
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The SMA Miracle: First Ever Treatment Approved for Rare Disease
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Obamacare Helped Her Fight HAE: What Happens Next?
Now that the brutal and bruising 2016 Presidential Election is behind us and we’ve waded into the Trump era, maybe we can finally move past some of the most divisive…
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Obamacare Helped Her Fight HAE: What Happens Next?
