According to a story from Spectrum News, the Andrews family has been dealing with a rare disease called Niemann-Pick disease type C for years. Parents Pam and Chris knew early…
According to Oren Goldshtein, CEO of Vectorious Medical Technologies, remote patient monitoring is needed now more important than ever. Nobody knows how long the COVID-19 pandemic will last or…
According to a story from Wexford People, 8-year-old Mia-Lily Ruttle wants to spread some hope to people around the globe. The girl, who has neurofibromatosis, was upset by the impact…
Social Distancing Social distancing has been coined as the most surefire way to stop the spread of COVID-19 across the American populace. What is this phrase used to refer to?…
No one was given a prep course on how to handle quarantine, especially not with kids. Here are some suggestions to help you get through these unique times, while making…
As Patient Worthy readers, we hope you and your families are doing well during this challenging time. The health and safety of our rare community is always at the…
According to BioSpace, an experimental drug designed to treat cancer and HIV may also be poised to treat patients with COVID-19. The drug, called leronlimab, was created by biotechnology…
According to a story from People's Pharmacy, a dizzying array of advice related to minimizing spread or coronavirus/COVID-19 has barraged our senses over the last few weeks as the number…
As sourced from QZ, trials for new medications are notoriously tedious. Rare disease populations know more than most that the barriers to meeting the entry criteria of a trial can…
Every day on the news we hear the pleas for more medical masks for doctors and nurses, more personal protective equipment, and more ventilators. We all know what masks are,…
According to a story from gurufocus.com, the biotechnology company Capricor Therapeutics has recently announced the initiation of a compassionate use program for its experimental drug CAP-1002. This drug will be…
April is designated as Sarcoidosis Awareness Month. This year's event will be the sixth annual awareness campaign, which will involve collaboration between the Foundation for Sarcoidosis Research and the American…
Michael and Armené Kapamajian were at home in Los Angeles settling in with their one week old baby, Sasoun, when their doctor called and asked them to come in…
What is Repurposing? Repurposing involves testing whether or not a compound approved of another condition may be capable of also treating an illness with no approved treatment option. It's advantageous,…
According to a story from Vox, while the Center for Disease Control and Prevention (CDC) and other health authorities have reported the primary symptoms of coronavirus/COVID-19 to be a dry…
Emily Knakmuhs's two-and-a-half-year-old Kennedie had just made it past a tough couple of years. When she was born, her family noticed she wasn't growing, but her pediatrician attributed it to…
On March 24th, 2020, Patient Worthy released a story announcing the formation of a Coronavirus Emergency fund by the American Kidney Fund (AKF). The goal of this fund is to…
According to a story from People's Pharmacy, US Surgeon General Jerome Adams recently stated in a tweet that regular citizens should stop buying face masks because they are not useful…
The world is experiencing an unprecedented time in the medical realm with the rapid spread of COVID-19, a novel coronavirus. It may be difficult to understand how coronavirus may impact…
As we live through the Great Quarantine of 2020, online therapy may be piquing your interest. The world is in a time of uncertainty, which is psychologically stressful (and isolating),…
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