Myositis Myositis is an autoimmune disease that leads to muscle damage. Patients live with chronic disability due to the symptoms of this rare condition. These include skin rashes, pain, weakness, fatigue,…
It is crazy to think back to a few months ago and see how much has changed. In March, SARS-CoV-2, which you probably know as COVID-19, was declared a global…
Last night, I texted my mom to ask what blood type I was. "Type A, I think? I'll have to check. Why?" she texted back. Well, I had just read…
As much as you and I have tried to keep up on COVID-19 news, the information changes every day. Although about 80% of cases are asymptomatic or mild to…
A recent study that utilized the COVID-19 Global Rheumatology Alliance registry has evaluated the risks that the novel coronavirus brings to those with lupus and other rheumatic diseases, as reported…
Stacey Saiontz is many things: a worker, a wife, a mother. But right now, she is concerned. As an allergy parent, or a parent whose child has severe food…
It has been nearly 3 months for Vonny LeClerc, a 32-year-old journalist from Glasgow, Scotland. Nearly 3 months of extreme fatigue, joint pain, body aches, chest pain, intermittent fevers and…
NAMI, the nation’s foremost agency for mental health, defines depression as “more than just feeling sad” or just a “rough patch” in our lives. Doctor Susan Noonan reported on…
According to a story from The Intercept, Gilead Sciences' drug remdesivir is being touted in the media as a major development in the treatment of COVID-19, the illness caused by…
Kimberly Underhay Kimberly Underhay is a Canadian who has survived cancer. She has also been diagnosed with osteoarthritis and has to use a walker. Her disabilities have left her unable…
As reported in Parkinson's News Today; the way that COVID-19 interacts with pre-existing conditions is now being uncovered as the novel virus makes it way across the world. A new…
Being a healthcare worker can be difficult: long hours, lots of moving parts, exposure to many patients and illnesses, and tons of policies and procedures to follow. But being a healthcare worker…
Over the last few months, most of the news you've read has been about COVID-19. Though the first cases appeared in November or December of 2019, the novel coronavirus…
Recently, NPR's All Things Considered discussed a troubling story on the show: rapidly increases diagnoses, and fatalities, of healthcare workers stemming from COVID-19. The novel coronavirus was declared a pandemic in…
Dr. Changcheng Zheng of the University of Science, China, recently spoke to Cancer Network about a case study indicating that tocilizumab (Actemra) could effectively treat people with multiple myeloma…
According to StatNews, biotechnology company 23andme is looking to understand the intersection of genetics and COVID-19. Normally, 23andme uses ancestry kits to inform users of their genealogy. But now, the…
My coworker isn't social distancing. In fact, she's more touchy than ever. She always wants to cuddle or play when I'm in the middle of writing an article. She yells…
COVID-19 changed the way that many of us live, shop, socialize, and work. Currently, the global pandemic sits at 5.54 million cases. But even in places like Uganda, with only…
A few months ago, many of us were living completely different lives: going to rare disease conferences, heading to work each day, going out for food, seeing family and friends.…
For the last few months, we've been inundated with stories of COVID-19, and with good reason, considering the global pandemic reached over 5 million cases worldwide as of this…
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NORD has received thousands of phone calls and emails each week from concerned rare disease patients. They are asked for advice and how to decipher the myriad of contradictory information…
According to a recent article in Nature, many countries are anticipating an immediate response from newly developed antibody tests. These tests are slated to bring relief from the lockdown and…
Loneliness is difficult for everyone regardless of the situation, but the current pandemic has definitely amplified it. In a time of isolation and distancing, it's difficult to not feel alone.…
By Natalie Homan from In The Cloud Copy The new reality of the COVID-19 pandemic means that workplaces are changing very quickly. This requires every employee to adapt, and neurodiverse…
By Natalie Homan from In The Cloud Copy In the United States, a disease is considered “rare” if it affects less than 200,000 Americans at any given time. Diseases can…
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