Hayden Grosvenor is used to spending time in the hospital. He has Langerhans cell histiocytosis (LCH), a rare condition that is characterized by an excess of white blood cells. Because…
Research During COVID Many medical research projects have faced hurdles since the pandemic has started. Regulators have changed development timelines, and many have had to delay their clinical trials due…
Many people have questions about the COVID-19 vaccine, a number of them pertaining to the speed at which it was developed and approved. Rare disease patients are no exceptions. Barbra…
Eurordis The European Organization for Rare Diseases (Eurordis) is a nonprofit organization which organizes over 930 rare disease groups into one alliance. Groups have joined the network from 73 different countries.…
Laura Bonnell’s two children have cystic fibrosis (CF). This condition affects the respiratory system and can severely impact patient’s immune system. She explains how she didn’t own a single N95…
For the last year, COVID-19 has dominated the headlines. The viral pandemic, present in over 200 countries and territories across the globe, is responsible for 86.7 million cases worldwide,…
Pulmonary fibrosis is a condition that is caused by scarring of the lungs which can lead to shortness of breath and other respiratory issues. Some cases of COVID-19 have lead to…
As the pandemic has raged on, we have learned more and more about what side effects can occur from severe COVID-19 infection. Some of these are common in patients with…
by Lauren Taylor from In The Cloud Copy COVID-19 has now been wreaking havoc on our country and world for months, with little end in sight. It came very quickly…
Recently, Business Insider reported on published, peer-reviewed results following the Adaptive COVID-19 Treatment Trial (ACTT-2). The Phase 3 clinical trial, sponsored by the National Institute of Allergy and Infectious Diseases…
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Since March, most of the globe has been anxiously awaiting updates on COVID-19, the virus that has infected over 74 million people. One update was just released: the CDC has…
Admittedly, 2020 has been tough for a variety of reasons. One of the greatest? The spread of COVID-19, a novel coronavirus attributed to 72.8 million cases and 1.62 million deaths…
For most of 2020, the coronavirus pandemic has dominated the headlines. What began earlier this year has transformed into a viral crisis with 69.8 million cases worldwide. To stifle the…
A review of COVID-19 data from the UK shows that patients with rare autoimmune rheumatic disease (RAIRD) face a higher mortality risk, according to an article in Healio. The study,…
While there is still a lot left to learn about COVID-19, there are a number of facts that we know, one of which is that children face less severe cases.…
For the entirety of 2020, our lives have been dominated by COVID-19, the novel coronavirus linked to 64.5 million cases and 1.49 million deaths across the globe. In the United…
Michael George and his team from the University of Pennsylvania have recently uncovered new insights regarding autoimmune patient’s comfortability with care during COVID-19. They've been working since the pandemic began…
According to a story from Newswise, the ongoing coronavirus/COVID-19 pandemic has become the subject of wild speculation. In our divided nation, many people have chosen to hear what they want…
Sorreto Therapeutics recently announced through Globe Newswire that it has filed an application for its investigational new drug COVI-DROPS (STI-2099). The study will investigate the safety and efficacy of the…
Recently, biotherapeutics company PureTech Health announced that their Phase 1 trial to evaluate LYT-100 (deupirfenidone) has completed. During the multiple ascending dose and food effect study, researchers analyzed the safety,…
COVID-19’s tentacles have invaded the New Drug Applications (NDAs) for 2020. A recent article in Fierce Pharma reported that the FDA has been especially vigilant in scrutinizing NDAs this year,…
Navigating a Rare Disease in a Pandemic The COVID-19 pandemic has affected everyone, but those already living with a rare disease have unique challenges. With a compromised immune system, they…
According to a story from Charcot-Marie-Tooth News, patients living with Charcot-Marie-Tooth disease have reported in a recent survey that their symptoms of pain and decline in mobility increased during the…
As reported in the BBC; Aaron Bradley is concerned that returning to work will endanger his son’s health. This follows the Scottish governments decision to move his toddler off of…
The entire world has been waiting for a vaccine for COVID-19 since the beginning of the pandemic in March. In response, a number of pharmaceutical companies have entered the race…
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