Recent COVID-19 News

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Featured Article

Efforts Continue Beyond Awareness Month to Expand Newborn Screening Panels in US
COVID-19 News, Hemophilia News Today
September 30, 2020
It took one year for Dona Krystosek to get a diagnosis for her son, Levi, after he was born. The family received three misdiagnoses of fatal diseases until they found out Levi has Jansen’s metaphyseal chondrodysplasia — an extremely rare form of dwarfism. “The hardest thing for me to handle [about] … not getting an […] [read/download]
#MSVirtual2020 – Rituximab, Ocrevus Linked to Higher Risk of Worse COVID-19 Outcomes
COVID-19 News, Multiple Sclerosis News Today
September 30, 2020
The use of certain disease-modifying therapies (DMTs) such as rituximab and Ocrevus (ocrelizumab), which lower the number of a patient’s immune B-cells, may increase the odds of developing a more severe COVID-19 disease course for people with multiple sclerosis (MS), a study suggests. The study, which includes data from the largest group of patients with MS and COVID-19 currently [read/download]
Aptinyx Reopens Enrollment in Phase 2 Study of NYX-2925 for Chronic Pain
COVID-19 News, Fibromyalgia News Today
September 29, 2020
Enrollment has resumed for Aptinyx‘s Phase 2 clinical trial of NYX-2925, an oral small molecule designed to treat chronic pain in adults with fibromyalgia, the company announced. The study (NCT04147858) is recommencing after being temporarily suspended in March due to the escalation of COVID-19 in the U.S. Aptinyx has assured patients that the company will take […] [read/download]
Using Telemedicine Ensures Patient Monitoring and Safety in Emergencies, Study Says
COVID-19 News, Fabry Disease News
September 29, 2020
In times of emergency, telemedicine, home-based treatments, and lab tests should be adopted whenever possible to help people with Fabry disease manage their condition while ensuring their safety, an observational study in Italy suggests. The study, which focused on analyzing the clinical outcomes of Fabry patients during the COVID-19 outbreak, has found that all non-urgent […] [read/download]
Givinostat Wins Rare Pediatric Disease Designation; Phase 3 DMD Trial Fully Enrolled
COVID-19 News, Muscular Dystrophy News
September 29, 2020
Italfarmaco has now completed recruitment — delayed in the spring due to the COVID-19 pandemic — of boys with Duchenne muscular dystrophy (DMD) for its ongoing Phase 3 trial of givinostat, according to a top company officer. In another milestone, Givinostat has “just received” rare pediatric disease designation, Paolo Bettica, MD, PhD, chief medical officer at Italfarmaco, […] [read/download]
First Clinical Trial Launched for AML, Other Blood Cancer Patients With COVID-19
Acute Myeloid Leukemia News, COVID-19 News
September 28, 2020
The Leukemia & Lymphoma Society (LLS) has announced the launch of the first clinical trial dedicated to people with blood cancers, including acute myeloid leukemia (AML), who are infected with COVID-19. The study will be conducted as part of the Beat AML Master Clinical Trial (NCT03013998), a precision medicine study launched in 2016. The basic idea behind this […] [read/download]
Cure Sanfilippo Foundation Aims to Educate on Remote Learning for Special Needs Children
COVID-19 News, Sanfilippo News
September 25, 2020
A new initiative led by the Cure Sanfilippo Foundation is seeking to provide more insight on the impact of remote learning on children with Sanfilippo syndrome and other developmental disorders. The advocacy effort is being spearheaded by the organization’s chief science officer and co-founder, Cara O’Neill. The goal is to alert school systems of the need […] [read/download]
OMRF Opening Study Into Onset and Progression of Sarcoidosis
COVID-19 News, Sarcoidosis News
September 24, 2020
People with sarcoidosis are being asked to donate blood samples and information related to their disease to help the Oklahoma Medical Research Foundation (OMRF) further its work into how sarcoidosis develops and progresses. Healthy individuals, serving as a control group, are also asked to take part. Participants will be asked to undergo a screening process, fill out […] [read/download]
New Virtual Tool May Allow Fast, Accurate PH Diagnosis During COVID-19
COVID-19 News, Pulmonary Hypertension News
September 23, 2020
A new virtual tool, called VEST, is aiding clinicians in remotely diagnosing people with Group 1 pulmonary hypertension (PH) per the World Health Organization (WHO) classification, a new study reports. VEST, short for virtual echocardiography screening tool, uses images from routine echocardiography exams of a person’s heart to diagnose PH. Researchers say this represents an […] [read/download]
COVID-19: Your Weekly Roundup of Key Developments
COVID-19 News
September 23, 2020
Sinovac launches Phase 3 trial for CoronaVac in Turkey Sinovac has begun a Phase 3 trial for its COVID-19 vaccine candidate, called CoronaVac, in Turkey. The first part of the randomized trial will test the safety and efficacy of the experimental vaccine in 1,300 healthcare workers. The second part of the trial will include 12,000 […] [read/download]

Why Ruth Bader Ginsburg Is My ALS Role Model
ALS News Today Columns, COVID-19 Columns
September 29, 2020
My heroes and role models come in all shapes and sizes. For example, Ruth Bader Ginsburg, who stood barely 5 feet tall, has always held a mighty spot in my mind. Best known as the second woman in U.S. history to be appointed a Supreme Court Justice, I admired her for her attitude toward life […] [read/download]
Spreading EDS Awareness Is Critical
COVID-19 Columns, Ehlers-Danlos News Columns
September 29, 2020
Life has continued to be a stressful whirlwind of teaching, college counseling, and just trying to manage the all-hands-on-deck reality of working in a school that’s back in session with kids on campus. It’s going about as well as anyone could’ve hoped, but that doesn’t mean it’s easy for teachers or students. Students have much […] [read/download]
Hope Carries Me Through Chronic Disease Challenges
COVID-19 Columns, Sarcoidosis News Columns
September 29, 2020
I went to bed in the fourth quarter of “Monday Night Football” with my brother Antony’s words haunting me. My favorite team was losing, and I knew what he’d say about abandoning them for sleep: “There’s a lot of game left.” Antony believes in comebacks, and so do I, particularly when it comes to sarcoidosis. […] [read/download]
Let’s Not Forget the Superheroes
COVID-19 Columns, Lymphoma News Today Columns
September 28, 2020
Lately, in the midst of all the insanity going on in the world and the ensuing, albeit dispiriting, headlines covering all things COVID-19, there has been a notable lack of attention to other illnesses, namely cancer. Yet, last week, as I absorbed the news of U.S. Supreme Court Justice Ruth Bader Ginsburg‘s (RBG) passing due […] [read/download]
Time Contracts Near Tragedy
COVID-19 Columns, Cystic Fibrosis News Today Columns
September 28, 2020
My last column, a letter to my younger self, was written before the pandemic. When the world first began to realize the havoc wreaked by COVID-19, I predicted I would be reading and writing more than ever. The converse ended up being true. Writing (my consolation) and reading (my guide in this difficult world) both […] [read/download]
Staying Honest and Motivated While Living With Sarcoidosis
COVID-19 Columns, Sarcoidosis News Columns
September 25, 2020
Let’s be honest … Ok, I’ll be honest. I’ve found that being honest with myself seems to do me a world of good. And I don’t mind being honest with others about my health, but I often find their interest in my honesty is superficial. I think many are just being cordial when they ask […] [read/download]
Restarting Rituxan: One Down, and a Lifetime to Go
COVID-19 Columns, Multiple Sclerosis News Today Columns
September 24, 2020
Last week, I again started my twice-annual infusion of Rituxan (rituximab). After 384 days without my disease-modifying therapy, my team decided I could no longer wait. In its absence, my symptomology had worsened. Halting progression trumped a pandemic, and with personal protective equipment in place, I begin again. My temperature was taken, and I entered […] [read/download]
Making Exercise Easier: Tips From a Pulmonary Fibrosis Patient
COVID-19 Columns, Pulmonary Fibrosis News Columns
September 24, 2020
Exercising with a chronic lung disease is not for the faint of heart. Recall your most strenuous workout or physical activity: Your heart beats rapidly, you struggle to catch your breath, and sweat beads down your forehead. Now imagine doing that with lungs that feel stiff and painful upon inhalation. is the reality of […] [read/download]
Why the Fight Against Rare Disease Is Like High-stakes Soccer
Batten Disease News Columns, COVID-19 Columns
September 23, 2020
We all wish we could relive experiences from our childhood — those fleeting moments that turn into minutes and hours and days faster than we can say graduation. My own daydreams often place me on a soccer field somewhere in the southeastern United States, where I can almost smell the game’s unique blend of dirt […] [read/download]
I Started Going Outdoors More, but Soon Changed My Mind
COVID-19 Columns, Sickle Cell Disease News Columns
September 23, 2020
After many months of sheltering in place, or shielding, as we call it here in the U.K., the time finally came for me to leave my house for reasons unrelated to medical issues. The government had paused shielding requirements, but I had been committed to continuing my self-isolation indefinitely because I didn’t believe going outdoors […] [read/download]

Efforts Continue Beyond Awareness Month to Expand Newborn Screening Panels in US
COVID-19 News, Hemophilia News Today
September 30, 2020
It took one year for Dona Krystosek to get a diagnosis for her son, Levi, after he was born. The family received three misdiagnoses of fatal diseases until they found out Levi has Jansen’s metaphyseal chondrodysplasia — an extremely rare form of dwarfism. “The hardest thing for me to handle [about] … not getting an […] [read/download]
#MSVirtual2020 – Rituximab, Ocrevus Linked to Higher Risk of Worse COVID-19 Outcomes
COVID-19 News, Multiple Sclerosis News Today
September 30, 2020
The use of certain disease-modifying therapies (DMTs) such as rituximab and Ocrevus (ocrelizumab), which lower the number of a patient’s immune B-cells, may increase the odds of developing a more severe COVID-19 disease course for people with multiple sclerosis (MS), a study suggests. The study, which includes data from the largest group of patients with MS and COVID-19 currently [read/download]
Aptinyx Reopens Enrollment in Phase 2 Study of NYX-2925 for Chronic Pain
COVID-19 News, Fibromyalgia News Today
September 29, 2020
Enrollment has resumed for Aptinyx‘s Phase 2 clinical trial of NYX-2925, an oral small molecule designed to treat chronic pain in adults with fibromyalgia, the company announced. The study (NCT04147858) is recommencing after being temporarily suspended in March due to the escalation of COVID-19 in the U.S. Aptinyx has assured patients that the company will take […] [read/download]
Using Telemedicine Ensures Patient Monitoring and Safety in Emergencies, Study Says
COVID-19 News, Fabry Disease News
September 29, 2020
In times of emergency, telemedicine, home-based treatments, and lab tests should be adopted whenever possible to help people with Fabry disease manage their condition while ensuring their safety, an observational study in Italy suggests. The study, which focused on analyzing the clinical outcomes of Fabry patients during the COVID-19 outbreak, has found that all non-urgent […] [read/download]
Givinostat Wins Rare Pediatric Disease Designation; Phase 3 DMD Trial Fully Enrolled
COVID-19 News, Muscular Dystrophy News
September 29, 2020
Italfarmaco has now completed recruitment — delayed in the spring due to the COVID-19 pandemic — of boys with Duchenne muscular dystrophy (DMD) for its ongoing Phase 3 trial of givinostat, according to a top company officer. In another milestone, Givinostat has “just received” rare pediatric disease designation, Paolo Bettica, MD, PhD, chief medical officer at Italfarmaco, […] [read/download]
First Clinical Trial Launched for AML, Other Blood Cancer Patients With COVID-19
Acute Myeloid Leukemia News, COVID-19 News
September 28, 2020
The Leukemia & Lymphoma Society (LLS) has announced the launch of the first clinical trial dedicated to people with blood cancers, including acute myeloid leukemia (AML), who are infected with COVID-19. The study will be conducted as part of the Beat AML Master Clinical Trial (NCT03013998), a precision medicine study launched in 2016. The basic idea behind this […] [read/download]
Cure Sanfilippo Foundation Aims to Educate on Remote Learning for Special Needs Children
COVID-19 News, Sanfilippo News
September 25, 2020
A new initiative led by the Cure Sanfilippo Foundation is seeking to provide more insight on the impact of remote learning on children with Sanfilippo syndrome and other developmental disorders. The advocacy effort is being spearheaded by the organization’s chief science officer and co-founder, Cara O’Neill. The goal is to alert school systems of the need […] [read/download]
OMRF Opening Study Into Onset and Progression of Sarcoidosis
COVID-19 News, Sarcoidosis News
September 24, 2020
People with sarcoidosis are being asked to donate blood samples and information related to their disease to help the Oklahoma Medical Research Foundation (OMRF) further its work into how sarcoidosis develops and progresses. Healthy individuals, serving as a control group, are also asked to take part. Participants will be asked to undergo a screening process, fill out […] [read/download]
New Virtual Tool May Allow Fast, Accurate PH Diagnosis During COVID-19
COVID-19 News, Pulmonary Hypertension News
September 23, 2020
A new virtual tool, called VEST, is aiding clinicians in remotely diagnosing people with Group 1 pulmonary hypertension (PH) per the World Health Organization (WHO) classification, a new study reports. VEST, short for virtual echocardiography screening tool, uses images from routine echocardiography exams of a person’s heart to diagnose PH. Researchers say this represents an […] [read/download]
COVID-19: Your Weekly Roundup of Key Developments
COVID-19 News
September 23, 2020
Sinovac launches Phase 3 trial for CoronaVac in Turkey Sinovac has begun a Phase 3 trial for its COVID-19 vaccine candidate, called CoronaVac, in Turkey. The first part of the randomized trial will test the safety and efficacy of the experimental vaccine in 1,300 healthcare workers. The second part of the trial will include 12,000 […] [read/download]

Why Ruth Bader Ginsburg Is My ALS Role Model
ALS News Today Columns, COVID-19 Columns
September 29, 2020
My heroes and role models come in all shapes and sizes. For example, Ruth Bader Ginsburg, who stood barely 5 feet tall, has always held a mighty spot in my mind. Best known as the second woman in U.S. history to be appointed a Supreme Court Justice, I admired her for her attitude toward life […] [read/download]
Spreading EDS Awareness Is Critical
COVID-19 Columns, Ehlers-Danlos News Columns
September 29, 2020
Life has continued to be a stressful whirlwind of teaching, college counseling, and just trying to manage the all-hands-on-deck reality of working in a school that’s back in session with kids on campus. It’s going about as well as anyone could’ve hoped, but that doesn’t mean it’s easy for teachers or students. Students have much […] [read/download]
Hope Carries Me Through Chronic Disease Challenges
COVID-19 Columns, Sarcoidosis News Columns
September 29, 2020
I went to bed in the fourth quarter of “Monday Night Football” with my brother Antony’s words haunting me. My favorite team was losing, and I knew what he’d say about abandoning them for sleep: “There’s a lot of game left.” Antony believes in comebacks, and so do I, particularly when it comes to sarcoidosis. […] [read/download]
Let’s Not Forget the Superheroes
COVID-19 Columns, Lymphoma News Today Columns
September 28, 2020
Lately, in the midst of all the insanity going on in the world and the ensuing, albeit dispiriting, headlines covering all things COVID-19, there has been a notable lack of attention to other illnesses, namely cancer. Yet, last week, as I absorbed the news of U.S. Supreme Court Justice Ruth Bader Ginsburg‘s (RBG) passing due […] [read/download]
Time Contracts Near Tragedy
COVID-19 Columns, Cystic Fibrosis News Today Columns
September 28, 2020
My last column, a letter to my younger self, was written before the pandemic. When the world first began to realize the havoc wreaked by COVID-19, I predicted I would be reading and writing more than ever. The converse ended up being true. Writing (my consolation) and reading (my guide in this difficult world) both […] [read/download]
Staying Honest and Motivated While Living With Sarcoidosis
COVID-19 Columns, Sarcoidosis News Columns
September 25, 2020
Let’s be honest … Ok, I’ll be honest. I’ve found that being honest with myself seems to do me a world of good. And I don’t mind being honest with others about my health, but I often find their interest in my honesty is superficial. I think many are just being cordial when they ask […] [read/download]
Restarting Rituxan: One Down, and a Lifetime to Go
COVID-19 Columns, Multiple Sclerosis News Today Columns
September 24, 2020
Last week, I again started my twice-annual infusion of Rituxan (rituximab). After 384 days without my disease-modifying therapy, my team decided I could no longer wait. In its absence, my symptomology had worsened. Halting progression trumped a pandemic, and with personal protective equipment in place, I begin again. My temperature was taken, and I entered […] [read/download]
Making Exercise Easier: Tips From a Pulmonary Fibrosis Patient
COVID-19 Columns, Pulmonary Fibrosis News Columns
September 24, 2020
Exercising with a chronic lung disease is not for the faint of heart. Recall your most strenuous workout or physical activity: Your heart beats rapidly, you struggle to catch your breath, and sweat beads down your forehead. Now imagine doing that with lungs that feel stiff and painful upon inhalation. is the reality of […] [read/download]
Why the Fight Against Rare Disease Is Like High-stakes Soccer
Batten Disease News Columns, COVID-19 Columns
September 23, 2020
We all wish we could relive experiences from our childhood — those fleeting moments that turn into minutes and hours and days faster than we can say graduation. My own daydreams often place me on a soccer field somewhere in the southeastern United States, where I can almost smell the game’s unique blend of dirt […] [read/download]
I Started Going Outdoors More, but Soon Changed My Mind
COVID-19 Columns, Sickle Cell Disease News Columns
September 23, 2020
After many months of sheltering in place, or shielding, as we call it here in the U.K., the time finally came for me to leave my house for reasons unrelated to medical issues. The government had paused shielding requirements, but I had been committed to continuing my self-isolation indefinitely because I didn’t believe going outdoors […] [read/download]

Recent COVID-19 News

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