News

FFF Enterprises and Bionews announced today that both rare and orphan disease advocates are joining forces to provide patients with resources to help them connect as a community and continue to manage their health during this time when many are finding themselves alone. Recognized as the nation’s leading supplier of…

While there are few silver linings to the cloud created by COVID-19, the pandemic that has killed tens of thousands, hobbled economies worldwide and drove millions to quarantine in their homes, one may be a new appreciation of telemedicine. “If something good could come out of this crisis, it’s that…

New guidelines have been published to help patients and physicians manage myasthenia gravis (MG) and Lambert-Eaton myasthenic syndrome (LEMS) during the COVID-19 pandemic. Broadly, the guidelines suggest that people with MG or LEMS should continue on their current therapies and take extra precautions to minimize the chance…

The National Organization for Rare Disorders (NORD) has opened a financial assistance program for people in rare disease community who are affected by the COVID-19 pandemic in the U.S. Called the NORD COVID-19 Critical Relief Program, the effort will provide up to $1,000 annually to those eligible to…

UCB has completed its acquisition of Ra Pharmaceuticals, priced at about $2.3 billion, meaning that zilucoplan — an investigational treatment for myasthenia gravis (MG) — is being added to UCB’s product pipeline. The transaction, whose start was announced by UCB last year, is expected to…

Cell models that best mirror the surface of muscle cells crowded with acetylcholine receptors (AChR) are most helpful for understanding how self-reacting antibodies interrupt communication between nerve cells and muscles in myasthenia gravis (MG), a study reports. Using these models, researchers found that some antibodies only recognize clustered receptors,…

Treatment with Soliris (eculizumab) leads to significant benefits in people with treatment-resistant generalized myasthenia gravis (gMG), including those with myasthenic crisis and thymoma-associated disease, a real-world study from Japan shows. The data suggest that Soliris may be suitable for gMG patients with these features and who also check predefined…

First, the bad news: If you’re one of the 30 million or so Americans with a rare disease, you probably have lower immunity to the novel coronavirus than most people. Now, the good news: You already know how to face loneliness and adversity — qualities that make you far stronger…

Younger age, more advanced thymoma (tumors of the thymus) and cancer recurrence predict poorer survival in people with myasthenia gravis (MG) whose tumors are surgically removed, a large study from China reports. Older age, in contrast, seems to protect against the likelihood of a tumor returning. The study,…

The Living Rare, Living Stronger Patient and Family Forum, originally set for May 14–16 in Cleveland, Ohio, has been postponed until July 18–20 because of the coronavirus disease COVID-19 pandemic. The event’s sponsor, the National Organization for Rare Disorders (NORD),…