“Ladies and gentlemen, please welcome to the MRI, all the way from the changing room, the one and only …” I’ve sauntered into the room and grabbed the finger heart rate monitor, only to turn it into a makeshift microphone. The nurse looks at me, clearly unamused. I know…
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Horizon Therapeutics has launched its #RAREis Representation program aimed at increasing diversity, equity, and inclusion among patients with rare diseases. There are about 400 million people worldwide living with a rare disease; for many of them, access to diagnosis, care, and treatments can be challenging. Accessing better care depends on…
This March, people with neuromyelitis optica spectrum disorder (NMOSD) are celebrating NMO Awareness Month by sharing stories of how the progressive autoimmune disorder has not stopped them from living meaningful lives. The initiative calls attention to NMOSD, a condition that affects approximately 15,000 people in the U.S. and 10,000…
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…
We cannot separate science from life. Trust me, I’ve tried. Like most young people, I once thought of myself as invincible. So I was absolutely stunned when I was diagnosed with neuromyelitis optica (NMO) at the age of 24. With the diagnosis, my world came crumbling down. Yet while…
Today begins NMOSD Awareness Month, and to say that I have been busy preparing is an understatement. During the past month, in a push to have NMOSD Awareness Month recognized in all 50 U.S. states, I have applied for proclamations in my home state of Colorado, as well as…
The nonprofit RARE-X is creating an easily-accessible, centralized data hub for all rare disease patient data that can help researchers answer questions about existing disorders, discover new ones, and work toward finding treatments. It was spun out of the work that Nicole Boice, founder and chief engagement officer of…
I have never met Sumaira Ahmed in person, but her energy and passion radiate through computer screens and phone calls. It’s what convinced many of us to follow her charge and become ambassadors for her nonprofit organization, The Sumaira Foundation for NMO, or TSF for short. As…
“Pain is inevitable, suffering is optional.” — Popular proverb I once slipped on black ice at the end of our street. My handbag, its contents, and my cellphone flew just outside of arm’s reach. I could see our home while I lay on the cold and dirty city sidewalk. Maybe…
Since 2008, Rare Disease Day — the last day of February — has brought together patients, caregivers, family members, friends, and advocates from around the world to raise awareness and improve equity for the more than 7,000 known rare diseases that affect more than 300 million people. In 2022, the…
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