Redesigned Patient Website Launched by Janssen for Its US Campaign

To celebrate Rare Disease Day, on Feb. 28, Janssen has launched a refreshed national campaign, called iMaGineMyMG, to increase awareness about myasthenia gravis (MG), provide support to people living with the disease and their families, and open up opportunities for potential research. The company has redesigned the campaign’s…

“It’s just anxiety.” “It’s just stress or PTSD.” “You just need more rest.” For many of us in the rare disease community, these comments aren’t uncommon. As someone with seronegative myasthenia gravis (MG), I hear them almost every time I go to the emergency room. I experience bulbar…

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 burden,…

A week or so after spending three days in the hospital, I found out I had myasthenia gravis (MG). My symptoms were raging. They included severe double vision, slurred speech, and extreme fatigue, and eating, chewing, and swallowing were next to impossible. All of it was terrifying. Getting up to…

Researchers report having uncovered the atomic structure of the acetylcholine receptor, the target of the abnormal immune response that causes most cases of myasthenia gravis (MG). They also detailed how the receptor is activated by changes in its shape when combined with two small molecules. Their work could help…

At some point in everyone’s life, we all feel misunderstood. One of my earliest memories is from when I was 6, and a group of kids made me feel like I didn’t fit in. I don’t remember exactly what they did, but I do remember how lost I felt. It’s…

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…

Nearly half of all people with myasthenia gravis (MG) in Poland were admitted to a hospital a mean of two times in 2018, although not always for complications of their disease, a recent nationwide database study reported. Reasons for hospital stays included relevant treatments,…

With a prevalence of 14-40 cases per 100,000 people in the U.S., myasthenia gravis (MG) is considered a rare disease. Plus, early-onset MG can mimic other diseases like multiple sclerosis, amyotrophic lateral sclerosis, and others. If a patient is one of the “lucky” ones who has autoantibodies indicative of…

It’s been nearly a year since the EveryLife Foundation for Rare Diseases released its expansive report finding the total economic burden of rare disorders in the U.S. to be nearly $1 trillion.