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 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…
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…
By now, everyone has heard of COVID-19. Information is constantly being updated surrounding the nature, symptoms, spread, and potential treatments for the illness. Despite this constant influx of information, there…
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…
In a period of unprecedented changes, it is understandable that people may question what their lives may look like moving forward. COVID-19 has now spread to 196 countries and…
As originally reported in Smart Parenting; many families with rare diseases are struggling to keep up with their healthcare regime as new restrictions block families from accessing doctors and normal…
As originally reported in Global News.,New Brunswick teen Mackenzie Walsh will be 16 this week, but she doesn't want a car or a sweet 16 party. She wants to go…
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…
According to a story from Medpage Today, rheumatologists could play an important role in treating patients with the most severe cases of COVID-19/coronavirus. This is because some of the drugs…
Living with a rare disease during this pandemic is scary. There are additional concerns, risks, and worries that must be considered. Those affected by adrenoleukodystrophy have to keep many of…
According to a story from The Intercept, Gilead Sciences' antiviral drug remdesivir, which is being tested as a treatment for coronavirus/COVID-19, was just given Orphan Drug designation by the US…
If the world were as careful in everyday life Perhaps I’d be sick less, I’d feel much less strife It's the small precautions, like washing your hands That for me…
The American Kidney Fund (AKF) has recently announced the formation of a Coronavirus Emergency Fund intended to support low income dialysis and transplant patients who may face unanticipated financial challenges…
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),…
According to a story from NeurologyLive, patients being treated for autoimmune diseases such as multiple sclerosis (MS) or myasthenia gravis could be at heightened risk of infection with coronavirus because…
The first few days of quarantine can feel like a vacation. Finally you have an excuse to say no, stay home, and watch reality TV, and there's nothing anybody can…
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