Happy Thursday! We hope everyone's new year is off to a good start. If you're in need of some inspiration, we're highlighting a story of a woman with CIDP accomplishing…
A recent study conducted in Oregon has shown that emergency medical responders may be biased against minority patients. It's the concept of unconscious bias. Discrimination is illegal, but that doesn't…
The Patient Access Network Foundation (PAN) is an organization which works to ensure that patients living with rare, chronic, or life-threatening diseases are not prohibited from receiving treatment due to their…
"Beyond research motivation, I want to give a voice to the disease to help researchers empathize and further understand who all their hard work is going toward." These are words from…
According to a story from finanznachrichten.de, the biotechnology company Saniona recently announced that its treatment period for adolescent patients in its Phase 2a clinical trial testing Tesomet as a treatment for…
According to a story from drugs.com, the biopharmaceutical company Reata Pharmaceuticals, Inc., recently announced that is had recently completed a end of Phase 2 meeting with officials from the US…
A recent article by NBC News is highlighting a growing concern among parents and professionals alike over the effectiveness of newborn genetic screening. There is a certain place between knowing…
A new clinical trial which will test a two-part combination treatment for Erdheim-Chester disease was recently added to the clinicaltrials.gov website. This trial will be specifically for patients with BRAF…
Prader-Willi Syndrome (PWS) is caused by deleted genes on chromosome 15. This results in improper signaling of satiety, leading to obesity. Individuals with the condition can suffer from respiratory/cardiac disease, gastric…
According to a story from the USC News, a team of doctors with the University of Southern California (USC) ALS Clinic are doing their best to help Shaun Kalpakoff, a…
According to a story from ABC News, Tony Gibson of Tennessee was recently diagnosed with the human form of mad cow disease, which is also known as Creutzfeldt-Jakob disease (CJD).…
According to a story from physiciansweekly.com, a recent report from the Institute for Clinical and Economic Review (ICER) suggests that, pending more data about overall price and longterm success rates,…
According to a story from Medical Xpress, a team of researchers affiliated with the Johns Hopkins Kimmel Cancer Center found some encouraging results when they tested an immune system enhancing…
According to a story from The Chicago Tribune, insufficient supplies of donated organs that could be used for transplant surgeries result in 33 deaths per day in the US. At…
According to a story from The Straits Times, Nicole Lim, who recently turned eighteen, learned that she had three different rare diseases when she was just thirteen years old. Getting…
Myasthenia Gravis (MG) is a progressive autoimmune disorder which results in the weakening of muscles. Most people with the condition are able to manage their symptoms with treatment and have…
According to a story from drugs.com, the biopharmaceutical company Catabasis pharmaceuticals recently provided updates on the status of its Phase 3 clinical trial testing its investigational therapy CAT-1004, also known…
According to the Boston Globe, the president of the Massachusetts Biotechnology Council has a personal stake in his continued advocacy for pharmaceutical development in his home state. Robert Coughlin has…
A new bronchiectasis research study was added to the clinicaltrials.gov website on New Years Day. This observational study, called the BRIDGE Study (Bronchiectasis Research Involving Databases, Genomics, and Endotyping) is…
EndoLogic’s study of their new gastroparesis drug, renzapride, showed no evidence of cardiotoxicity. Renzapride is a 5-HT4 agonist and 5-HT3 antagonist that has been successful in treating the symptoms of…
Yesterday marked the beginning of season 23 of The Bachelor on ABC-- a TV show that I am told I invest in to an embarrassing degree, and yet, somehow, feel…
When you're told your child has a rare, life-threatening condition you exhaust every resource trying to find answers. But the rarer the condition, the harder those answers are to find…
According to a story from globenewswire.com, the messenger RNA therapeutics company Translate Bio recently released the latest updates in regards to two of its leading product candidates for the treatment…
An article at ChrisD.ca recently shed a light on the difficulties of dating and intimacy when living with a terminal condition. Intimacy can be a stressful thing under the very…
Originally reported in a story from CNN, two year old Zainab Mughal from Pakistan has been fighting neuroblastoma- and in order to survive her treatment, she is going to need blood…
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