I was in fourth grade at the K-12 parochial school in a small, northern town in Wisconsin. After Kindergarten, we all were divided into two to three grades per classroom.…
Ceridwen Hughes is known for capturing visceral moments of reality in striking photography series. This time, she has navigated into the devastating world of rare disease and she's using her…
On Tuesday night, children hit the streets for their Halloween candy quest. Because of her rare disease, Emily Sawyer, had to stay in. But that didn't stop the community from…
Elliott Cunnew, from Collaroy, Australia is what you might call a cool dad. Elliot is the father two kids, 20-year-old Amelia, and 17-year-old Lachie. During the day, he sells private…
Sometimes patients receive the hard-hitting news of short life expectancies. What happens when a doctor tells you you won't make it to adulthood? What becomes your life priority? Sometimes, however,…
A new book was just released called “Nasty Women: Feminism, Resistance, and Revolution in Trump’s America,” a collection of essay's written by empowered women speaking out against life in Trumpland.…
Painters, photographers, sculptors, and visual artists that defy categorization, take note! The EveryLife Foundation for Rare Diseases' Rare Artist Contest is back, for the ninth year in a row. The…
Many individuals living with hemochromatosis can lead normal, healthy lives. Most people living with the condition have the same life expectancy than those without. However, it's important to know some fast…
I love Thanksgiving! It's a great time to catch up with friends and family. The one drawback is my diet is strictly controlled due to my rare disease, so at…
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