According to a story from BBC, Mats Steen passed away at 25 years old due to complications from his Duchenne muscular dystrophy. Upon his death, parents Robert and Trude grieved…
Our partner, The MDS Foundation is sponsoring another free MDS Patient & Family/Caregiver Forum. This forum will take place in Jacksonville, Florida When: Saturday, March 30th, 2019 Where: Mayo Clinic Cancer…
Our partner, The MDS Foundation is sponsoring another free MDS Patient & Family/Caregiver Forum. This forum will take place in Phoenix, Arizona. When: Saturday, March 9th, 2019 Where: Sheraton Crescent…
The Washington Post reported in December of last year that the 8-year-old Matadi Sela Petit had died during surgery in a Los Angeles hospital. The accident was caused by a…
According to a story from EurekAlert!, a new type of cancer drug that is being described as a "Trojan horse" that infiltrates cancer tumors is showing potential in several types…
Cryptococcosis Cryptococcosis is a disease caused by the Cryptococcus fungus. It can affect the lungs, the spinal cord, or the brain. When the brain is infected, the condition is called…
Hypoparathyroidism Hypoparathyroidism (HP) is caused by low levels of the parathyroid hormone (PTH). Most people develop this disease after thyroid surgery as a result of accidental damage/removal of the parathyroid…
Loukisha shares her journey with hereditary angioedma (HAE). Living with a rare disease you'll experience highs and lows. Unfortunately the moments of struggle are unavoidable; all you can do is…
According to a story from Andre Eger, the drug developer Gilead recently had the misfortune to announce that its clinical trial testing an experimental drug for late stage nonalcoholic steatohepatitis…
According to a study published in the Orphanet Journal of Rare Diseases, a study that was intended to identify a new approach to monitoring the progression of x-linked adrenoleukodystrophy in women…
Content Warning: The following article discusses sexual abuse. According to a story from Buzzfeed News, many former patients of an esteemed medical researcher named Reginald Archibald, who was affiliated with…
Happy Valentine's Day! Whether you're looking forward to spending tomorrow with a partner, or with friends and family, we hope you're having a good week. Today, we're highlighting an about…
According to a story from Pharmacy Times, the US Food and Drug Administration (FDA) have recently approved the first ever therapy for the rare disorder acquired thrombotic thrombocytopenic purpura (aTTP),…
According to a story from pm360online.com, the Novartis company Advanced Accelerator Applications S.A. recently announced that Health Canada has issued approval for Lutathera™ as a treatment for gasteroenteropancreatic neuroendocrine tumors…
The Importance of Speech The ability to speak gives individuals not only the opportunity to communicate with one another, it provides an outlet for expression, creativity, and connectedness. Unfortunately, that…
Merkel Cell Carcinoma Merkel cell carcinoma is a rare and aggressive form of skin cancer. It's most often caused by the Merkel cell polyomavirus. However, it can also occur as…
According to a story from PR Newswire, the biopharmaceutical company Soligenix, Inc. recently announced that it has received a patent in the EU for the company's innate defense regulator drug…
Lambert-Eaton Myasthenic Syndrome Lambert-Eaton Myasthenic syndrome (LEMs) is a rare autoimmune disease. The body's immune system targets nerve cells meaning patients experience muscle weakness. Other symptoms of LEMs include difficulty walking…
According to a story from northjersey.com, Adam Levitz's life was hanging in the balance just a few weeks ago. His liver, which had endured years of damage from the rare…
According to a story from pm360online.com, The National Brain Tumor Society (NBTS) recently awarded $750,000 to the Global Coalition for Adaptive Research. This cash is slated to go towards the…
According to a story from BioPortfolio, the biopharmaceutical company Acceleron Pharma Inc., recently announced the release of results from a Phase 2 study which tested the drug luspatercept as a…
According to a story from the Hindustan Times, seventeen year old Yash Galpelli was born with Wilson's disease, a rare genetic disorder. For a long time, he had no idea…
According to a story from MDedge, a review of patient data found that patients with osteomyelitis were more likely to need amputation within a two year period if they had…
According to a story from wect.com, local singer Dustin Chapman of Whiteville, NC has been struggling for years against a rare disease called achalasia, which affects the esophagus. He recently…
Ehlers-Danlos Syndrome Ehlers-Danlos syndrome (EDS) refers to a group of rare disorders which affect the connective tissues in the blood vessels, bones, skin, and other organs in the body. It's caused…
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