COVID-19

I never imagined that a nurse would slap me across my face, but it happened. The slap wasn’t hard — it was just enough to jolt me back to reality, and I was grateful the nurse had done it. About 10 years ago, I was waiting for my cesarean section…

A rare disease puts an economic burden on the patients, families, and caregivers that it affects, and will no doubt be an integral part of discussions on Rare Disease Day 2022, which brings international awareness about the more than 300 million people living with rare disorders. Part of that…

For the first 10 years after I was diagnosed with neuromyelitis optica (NMO), I chose to keep my condition private because I worried about how others might perceive me. But over the past two years of the pandemic, I’ve made the conscious decision to own my truth. I’ve been…

At first glance, many might say that our family appears totally healthy. However, my daughter Bella, 13, fights neuromyelitis optica (NMO) every day, and despite being her caregiver, I have health issues of my own. When Bella got sick in August 2017, I was almost done with the classes…

After experiencing all of the challenges that came with my 13-year-old daughter Bella’s neuromyelitis optica (NMO) diagnosis and the rareness of the disease, I wanted to find a way to connect with other NMO patients and caregivers. Bella was so young that I felt I needed the connections to…

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…

¿Cómo estás? 你好嗎 Ça va? How are you? With the holiday season upon us, people are getting together, hopefully safely, considering the persistent COVID-19 pandemic. While I always enjoy seeing friends and loved ones, I find it uncomfortable when I’m asked difficult questions like, “How are you?” While the phrase…

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…

Like many Canadians, I grew up watching curling, a beloved national sport that helped make the long prairie winters more tolerable. I’d watch with my grandparents and cheer for the teams that made it to the Olympics. Curling transfixed me with its elegant combination of skill, athleticism, and drama.

The Rare Disease Diversity Coalition (RDDC) awarded $600,000 in grants to ease the disparities faced by rare disease patients of color. These Impact Rare Disease Solution grants will go five RDDC steering committee working groups, which aim to identify problems for rare disease communities and advocate for solutions. The five…