Hawken Miller, features writer —

When I went off to school at the University of Southern California (USC), it was the first time, like many other 18-year-olds, that I would be living away from home. It was an especially huge change for me because of my Duchenne muscular dystrophy and my reliance on my…

Twins Oscar and Sebastian Spink, 11, may not be your typical “Avengers” superheroes, but they are certainly pursuing a gargantuan task that would have impressed even Tony Stark. The boys, diagnosed with facioscapulohumeral muscular dystrophy (FSHD) in 2019 and die-hard fans of the Marvel Cinematic Universe, are attempting to…

We throw around the word “community” a lot in the rare disease space, but don’t always think about what it really means and how it’s vital for patients, family, friends, and caregivers. I rarely see anyone in a wheelchair in public, let alone a power chair. Growing up, I didn’t…

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…

When we think about fighting, we might imagine the Ultimate Fighting Championship ring, where men and women beat each other up in front of millions of fans. Or we might see soldiers firing machine guns, or Darth Vader and Luke Skywalker trading blows with lightsabers. Our minds probably…

Patient registries are a hot topic of rare disease research and many organizations are taking advantage of this resource by signing up their patient communities and connecting with researchers. Eric Sid, MD, program officer for the Office of Rare Diseases Research (ORDR), said it is difficult to estimate how…

We can all smile, but there’s one type of smile that shows genuine positive emotion and is nearly impossible to fake. The zygomaticus major muscle in the cheek pulls the lips upward while the orbicularis oculi around the eye activate, wrinkling the outside corners of the eyes. It’s true happiness…

BioNews, the publisher of this website, hosted a virtual panel discussion on Rare Disease Day 2022, taking a deeper dive into what it’s like to live with a rare disease, including conversations about advocacy, mental health, survivor’s guilt, treatment of minority patients, and more. The Monday event, “A…

Living with Duchenne muscular dystrophy has plenty of downsides, such as having to use a wheelchair and a BiPAP machine, dealing with fatigue, and wearing night splints, among other things. But if you’ve read my column for a while, you’ll know I like to look on the positive…

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…