pandemic

Surge in Telehealth Brings Access, Convenience to Rare Disease Patients

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…

Looking Back on Our Last Day of Normal

When I think about Rare Disease Day 2020, it’s with mixed emotions. The day before, I got up at “o’dark-30” to catch an early flight to Toronto. I’d been invited to attend a Rare Disease Day celebration hosted by a pharmaceutical company that I’m partnered with. I was…

NMOSD Patients Reflect General Public in COVID-19 Knowledge, Attitudes, Iranian Study Finds

People with neuromyelitis optica spectrum disorder (NMOSD) have similar knowledge and attitudes about COVID-19 as the overall population, an Iranian study suggests. The findings highlight several areas where better education about COVID-19 is warranted, the researchers wrote. Their study, “Assessment of mental health, knowledge, and attitude…