Living with a rare disease provides enough challenges on its own. For residents of Chicago, however, challenges grew even more difficult as pharmacies shut down one after another. Certain areas…
Researchers have developed a new screening test for Pompe disease that is more sensitive than other options, says a report from January. Pompe disease is a muscular disorder caused by…
According to a story from the Independent, father Nick Sireau is worried that Brexit, the United Kingdom's plan to withdraw from the European Union, could affect the ability of his…
An organisation called PatientsLikeMe that helps to represent patients to governments and pharmaceutical companies has published a press release about the results of two recent studies designed to define and…
According to an announcement from the pharmaceutical company Retrophin, Inc., the company is starting to move forward with phase 3 trials for its drug candidate sparsentan. The drug is in…
According to a story from biopharmadive.com, the pharmaceutical company Roche is reporting a total of five deaths of patients with hemophilia A that have taken the company's product Hemlibra. While…
According to a story from 4-traders.com, the pharmaceutical company SteroTherapeutics recently announced that its drug candidate ST-002 was awarded Orphan Drug Designation by the U.S. Food and Drug Administration (FDA).…
According to a story from rte.ie, a team of scientists from the Trinity College Dublin have managed to discover a new technique that allowed them to shut down inflammatory response…
Happy Friday, everybody! This week we have a story about a woman with Dysautonomia and a wide range of interests, a mother who finds strength in a moment of grief,…
The Health eHeart Study was released on March 21st at the JAMA Cardiology website. The study investigates wearable technology and its ability to detect a common heart rhythm irregularity called atrial fibrillation (AF).…
Today is Bohring-Opitz Syndrome (BOS) Awareness Day! You'd be forgiven if you haven't heard of this rare disease, which is why awareness days exist! Bohring-Opitz Syndrome is an extremely rare condition…
According to a study published in the journal Nature Communications, a very common form of ovarian cancer may actually find its beginnings in the fallopian tubes, the tube that eggs…
According to a story from the Sunderland Echo, a man from the Sunderland area, Graydon Downs, was diagnosed with glioblastoma when he was just 33 years old. At that time,…
According to a story from sunmag.net, 23andMe, the genetics testing company widely known for its ancestral analysis measures, is now offering a genetics test to measure your risk of BRCA1…
If you have a close relative with Myasthenia Gravis (MG), you run a greater risk than the average population of being diagnosed with it. Additionally, you have a greater risk…
The United States Food and drug Administration recently announced its decision to grant a priority review. The privilege of expedited process, according to a press release, falls to AstraZeneca and…
According to a story from Chronicle Live, a medical team from Newcastle in the UK will travel to the Kerala province in southern India to treat patients with hemophilia. The…
According to NBC Right Now, the liver disease advocacy organization called The American Liver Foundation is launching an online platform designed to pair liver disease patients to clinical trials. The website,…
Sunday, April 8th is Cushing Awareness Day! Cushing syndrome (also known as hypercortisolism, not be confused with its sub-form Cushing disease) is an endocrine disorder characterized by excessive cortisol levels…
Khadeeja Munchi - Kay for short! - of South Africa may only be 21 years old, but her spirit and tenacity would confuse anyone into thinking she's decades older. "Life…
A story published on ESPN.com, and written by Jackie MacMullan, details NBA Hall of Fame inductee Nate "Tiny" Archibald's diagnosis of the rare disease amyloidosis. Amyloidosis occurs when a substance called amyloid builds…
Grab your sneakers because the 2018 Liver Life Walk is on the way, hosted by The American Liver Foundation. Thousands of people will walk to advance liver health and wellness, one…
As most people with invisible illnesses know, it's hard to explain certain behaviors to people when you don't "look sick." There's an endless list of symptoms that need to be…
According to an article from VCU Massey Center's blog, a team of researchers from the VCU Massey Cancer Center have successfully discovered a pair of genes that could be essential for…
Rare in Common, a new monthly podcast which features stories about patients with rare diseases, made its debut on Rare Disease Day, February 28th. The podcast's goal is to raise awareness and…
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