If it Looks Like a Duck A Biased Look at Mast Cells and COVID-19 Long Haul Syndrome
As COVID-19 rages on, an often overlooked group of people suffering with symptoms long after they have tested negative for COVID-19...
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Dear Congress
This story is not for the moms in the rare disease community because they are this story. This story is for the mostly old, mostly white,...
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Google, Facebook and the Subculture of Rare Disease Medicine
When my daughter first presented with hyperpigmented macules, I brought her to her pediatrician. When her pediatrician did not have an...
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Repurposed: How I Found a Treatment for My Daughters
Sometimes, something crosses our path that appears to mean nothing to us but we check it out anyway because our gut tells us to. That is...
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Diseases Without Doctors
Globally, there are 350 million people suffering from 7,000 different rare diseases. It takes an average of almost 8 years to get...
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Rare Diseases: A Life in the Shadow of Doubt
Growing up, I knew that more than anything, I wanted to be a mom. Long before I had children, I worried about being a good mom. I wanted...
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