According to a publication from Charcot Marie Tooth News, biomedical law expert Timo Minssen recently gave a presentation at the New York Genome Center where he discussed the potential ethical…
Hey...Is That Autumn on the Horizon? Well...kind of but sort of no, it is still pretty hot where we are; but it is only a matter of time before we…
Maisie Green Maisie Green is a 20-month-old little girl whose insurance has finally approved coverage for a life-altering spinal muscular atrophy treatment. Two weeks ago she received the singular infusion…
According to a story from curetoday.com, cancer patient registries have had a major impact in improving outcomes for patients. Take the story of Rhonda and Jeff Meckstroth as an example.…
The 11th Annual Scientific Workshop Science of Small Trials in the Age of Biological Plausability The 11th Annual Scientific Workshop will be a convergence of key regulatory officials, researchers, and…
Originally reported in People Magazine, a family struggled for years to figure out what was happening to their son, Cohen Bramlee, who for years received his nutrients from a central…
According to a story from The Rheumatologist, a rare complication linked to the monoclonal antibody drug rituximab called rituximab-induced serum sickness (RISS) appears when patients using the drug have immune…
Last week, we spotlighted a New York Times story about how under the Trump Administration’s new immigration policy, six migrants undergoing lifesaving treatments would be abruptly deported; including a young woman…
According to a story from globenewswire.com, the biopharmaceutical company Processa Pharmaceuticals, Inc., has recently announced that it has completed enrollment for its phase 2 clinical trial. This trial will be…
According to a story from news-medical.net, a team of researchers associated with the University of Alberta made a significant discovery when the identified a never before recognized biomarker for myasthenia…
According to a recent publication from Moneycontrol, patient advocacy groups in India are calling for the country's Minister of Health and Family Welfare, Harsh Vardhan, to establish a provisional system…
According to a publication from the Korea Times, the Eone Diagnomics Genome Center in Incheon, South Korea, is working to improve patients' accessibility to their own genetic sequence. Researchers believe…
According to a story from sectorpublishingintelligence.co.uk, the biopharmaceutical company Rhythm Pharmaceuticals, Inc., has recently announced the results from two phase 3 clinical trials. These trials were testing the company's experimental…
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In 1996, Tim Green made the comment that you cannot go through an NFL season without doing serious damage to your body. In a recent 60 Minutes interview with Steve…
According to a story from NBC News, the death of a patient following a fecal transplant procedure has finally prompted the US Food and Drug Administration (FDA) to take more…
Achalasia Achalasia is a rare disease which causes damage to the nerves in the esophagus. Patients have difficulty swallowing, heartburn, and chest pain. Many also experience weight loss. While there is…
The Isaac Foundation The Isaac Foundation was established by a man named Andrew McFadyen. He created the organization in 2007 in honor of his son who is diagnosed with the rare…
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According to a recent article published in News NWA, in 2017 Mark Bedwell, of Fort Smith, Arkansas had been told that based upon the rapid progression of his amyotrophic…
As my children are getting older they seem to create elaborate stories of why they didn’t clean up their room or complete any other task on their to-do list. I’ve…
According to a story from uk.finance.yahoo.com, the company Hutchison China MediTech Limited ("Chi-Med") has recently kicked off a phase 1 clinical trial. This trial is testing the company's investigational drug…
According to a story from the National Center for Advancing Translational Sciences (NCATS), research supported by the center is making it possible for kids born with serious, rare genetic disorders…
Netflix debuted a documentary series this month called 'Diagnosis' -- based on a New York Times Magazine column -- which follows individuals with or caregiving for patients with a mysterious,…
According to a story from Biotech 365, the biotechnology company Stoke Therapeutics, Inc., recently announced that the very first patient has enrolled for the company's observational study of Dravet syndrome…
Aevolve, a medical innovation platform, announced last week that it will be making rare disease research a top priority in its blockchain-powered accelerator, which provides a pathway for alternative funding…
There is a little boy in South Africa who is the only one in the country to be reported to have the ultra-rare neurodevelopmental disorder called alternating hemiplegia of…
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