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.…
According to a story from engadget.com, the tech company AliveCor, known for its KardiaBand device for Apple Watch, is currently developing new capabilities for its innovative watch strap. Currently, the…
According to a story from sciencedaily.com, new and improved standards of treatment are allowing patients with Duchenne muscular dystrophy to have longer lifespans than in the past. By all accounts,…
According to a story from the Herald Sun, Matilda Mahon, an eighteen month old girl from Australia, will need to travel to the United States in order to receive treatment…
26-year-old Rebecca Smith's pregnancy was going as smooth as can be until she was 8-months pregnant, reported Hertfordshire Mercury. Rebecca discovered a lump on her neck and went in for…
April 9th is promising to be a beautiful day this year. By then, spring should be in full swing. For some people that phrase rings quite literally. With the return…
Just recently, MMJ International Holdings announced that MMJ Bioscience has received proper Canadian licensing to grow cannabis specifically to develop cannabinoid medicines to treat patients battling multiple sclerosis and Huntington's…
According to a story from Xconomy National, some patient advocacy organizations are beginning to speak out about exorbitantly high drug prices despite the fact that many of them receive funding…
According to a story from The European Society For Medical Oncology, a recent study shows that young adults and teenagers are less likely to adhere to follow-up guidelines following treatment…
According to a story from guttmacher.org, the U.S. Department of Health and Human Services proposed a host of new regulations purported to enforce over 20 federal provisions related to "conscience…
According to a story from PR Newswire, the pharmaceutical companies Sanofi and and Regeneron Pharmaceuticals are implementing a plan to make Praluent injections more accessible and affordable for patients with…
According to a story from news-medical.net, researchers from The Scripps Research Institute have successfully outlined a new path for the treatment of Charcot-Marie-Tooth disease subtype 2D (CMT2D). The scientists hope…
The apparent goal behind the current Right to Try legislation is to create better access to life saving medication. Many people are excited about the possibilities such a bill could…
According to a story from pharmpro.com, the pharmaceutical company Abeona Therapeutics announced that it has been given Rare Pediatric Disease Designation for its ABO-202 program by the U.S. Food and…
According to a story from Financial Buzz, the pharmaceutical company Proteostasis Therapeutics recently announced that the company's experimental treatment PTI-428 was granted Orphan Drug Designation by the FDA. PTI-428 is…
According to a story from pm360online.com, some recent studies from Scandinavia are serving to highlight the lack of advances in treatment for psoriatic arthritis. While other types of arthritis have…
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