Two years ago, a seven-year-old boy from Syria was in dire condition. 80% of his skin was gone; his entire body covered in wounds and abrasions. He still had some…
Warwick Davis is a big name within the Star Wars community. Those that follow the movie universe religiously will know him for his role as Wicket the Ewok in Return…
The FDA makes decisions that determine the lives and treatments of patients with rare diseases. Many of these people who make these decisions aren't impacted by the disease in their…
Two-year-old Clark Cutler's parents felt alone when dealing with his rare disease, until they stumbled upon the United Leukodystrophy Foundation. Clark was diagnosed with Pelizaeus-Merzbacher disease when he was just…
In general, sarcoidosis can affect various organs in the body including the lungs. Sarcoidosis causes granulomas, which are tiny masses of tissue clusters, to form. This leads to malfunctioning or…
In an article by Wendy Henderson on sclerodermanews.com, joint stiffness, arthritis, joint contractures, tendon pain, and nerve pain are the most common causes of pain for people living with scleroderma. The…
When you hear your doctor say the C word, it feels like the whole world stops or launches into fast forward. I’ve spoken to many people who have had that…
Zero. Nada. Zip. Usually having nothing isn't a good thing, but in the case of people with uncontrolled seizures--like those that occur with Dravet syndrome--zero (as in no seizures) is…
Whether you’re dealing with chronic myelogenous leukemia (CML), chondrosarcoma, neuroblastoma, or the host of other pediatric cancer diagnoses, it’s the actual diagnosis that can take your breath away. You can…
Meghan Waldron, a 16-year-old girl in Massachusetts, disregards comments about her size, “Sure I’m small, but so are poison dart frogs!” Meghan runs track and country, plays violin and cello,…
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