COVID-19

Since the beginning of the COVID-19 pandemic in early 2020, many of us across the country have been doing everything we can to protect those around us and ourselves. I still remember when a federal mask mandate on public transportation was issued in the U.S. at the start of…

I have a theory: I’m convinced you can scream (almost) anything at a baseball game. The more obscure the cheer, the greater it is. “You call that peanut butter?!” “Turn ’em upside down!” “Let’s go, captain! Take ’em out to sea!” (This one is way more fun when said in…

The National Organization for Rare Disorders (NORD) has updated its State Report Card to make it more digitally friendly and added telehealth to its categories of rare disease policy issues in a nod to its increased use during the ongoing COVID-19 pandemic. NORD’s report card project began seven…

As the COVID-19 pandemic rages on, many families are concerned about the holidays. I’m trying to approach the season with patience, but as someone with neuromyelitis optica (NMO), I’m also tired, frustrated, and scared. Living with this disease and taking immunosuppressants means I’m at a higher risk of becoming…

Over 230 national organizations signed a letter urging all 50 U.S. state governors to “maintain and expand” flexibility with licensure requirements for the duration of the COVID-19 pandemic to ease access to care. During the pandemic, governors used emergency authority to waive certain state licensure requirements, giving healthcare providers…

COVID-19 vaccines are safe and well-tolerated by people with the rare neurological disorders neuromyelitis optica spectrum disorder (NMOSD), MOG-antibody disease (MOGAD), and transverse myelitis in the U.S., according to a recent study. Patients surveyed about their vaccine experiences reported a rate of side effects similar to that of the…

I was hesitant about getting the COVID-19 vaccine because there is still limited data about its safety and efficacy in people with rare diseases. However, there is also no evidence that the COVID-19 vaccines harm people with rare diseases, including people like me who are immunocompromised. I am still…

More than half of the people with rare diseases and their caregivers, asked in a survey, were undecided or less than willing to be vaccinated for COVID-19 if a vaccine was approved under emergency use authorization instead of the routine process, the EveryLife Foundation for Rare Disease reports. These findings…

I have conflicting emotions about the COVID-19 vaccine. I feel dominated by fear, even though I know this vaccine will lower my risk of contracting the coronavirus. On one hand, I know how important it is to be protected against COVID-19. It’s especially important for me for two reasons: I…

At an educational seminar next month, experts will discuss advances in the diagnosis and care of neuromyelitis optica spectrum disorder (NMOSD), as well as the ongoing COVID-19 pandemic and how it is affecting the NMOSD community.  Sponsored by the…