Happy first week of spring, everybody! Spring has finally begun, at least in our hemisphere-- we're breaking out shorts, sunscreens, allergy medicines, and some new rare disease updates. This week,…
When Mac Grieb was just a one-year-old he already had two open heart surgeries and doctors said that he would need another in his teenage years, reports The Inquirer. Last…
According to a story from Walcha News, Felicity Nivison first began feeling paralysis and pain in her feet and hands. Soon, the symptoms spread to her legs and she was…
A popular landscaping bush may be a major culprit in the spread of Lyme disease according to one story. The Japanese barberry plant (Berberis thunbergii) is a small invasive shrub that…
Doctors are using three-dimensional printed skulls to help prepare for surgery and as a tool to educate surgeons. With the 3-D models, surgery planning can be custom-tailored to each specific…
According to a story from webmd.com, diesel exhaust could increase the risk of developing amyotrophic lateral sclerosis, also known as Lou Gehrig disease. People who are exposed to diesel exhaust…
The International Pemphigus & Pemphigoid Foundation (IPPF) quarterly readers are about RARE patients and I am one of them. So many of patients shared their stories. Some of us were…
According to a story from People, parents Lester and Noreen Jessop from Utah recently discovered that all three of their children have a rare, life-threatening disease called pantothenate kinase-associated neurodegeneration. Their firstborn…
According to a story from pharmiweb.com, the pharmaceutical company Ovid Therapeutics announced recently that the U.S. Food and Drug Administration (FDA) has given its drug candidate OV101 Fast Track designation…
According to a story from aninews.in, mother Shashi Mishra and her daughter Anamika Mishra have staged a hunger strike in a desperate move to receive treatment for their muscular dystrophy.…
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