COVID-19 pandemic

Pompe patients embraced at-home ERT infusions during pandemic

The switch to at-home infusions of enzyme replacement therapy (ERT) — made necessary due to the COVID-19 pandemic — had a positive effect on people with Pompe disease and their families, a new study has found. “Our data underline that new therapeutic solutions are possible for chronic diseases…

I’m Grateful We Were Able to Manage My Son’s Cold From Home

It all starts with the dreaded cough and snotty nose. Next thing you know, you’re rushing your child to the doctor to make sure they’re OK. These days, most parents don’t get too worried about a common cold, unless COVID-19 is a concern. But once that’s ruled out, things…

Watching My Family’s Excitement Over My Son’s Progress

Family reunions are big and important events on my dad’s side of the family. Not long ago, my grammy (grandmother) got to host our first family reunion in two years. We usually have a family reunion every year, but during the COVID-19 pandemic, that didn’t happen. I was ecstatic…

Telehealth Added to Latest Digital-friendly NORD State Report Card

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…