Author Archives: Mary Chapman

MGFA Poised for 2021 Coast-to-Coast Walk 2740 Challenge

With the goal of raising funds and awareness to improve care and find a cure for myasthenia gravis (MG), the Myasthenia Gravis Foundation of America (MGFA) is hosting the 2021 Coast-to-Coast Walk and 2740 Challenge on Nov. 13. The event, which will be held virtually this year,…

Docuseries Earns Award for Depicting Lives of MG Patients

Digital-native marketing agency closerlook has garnered a bronze Pharma Lion for a documentary series that depicts life with myasthenia gravis (MG). The award was announced at the Cannes Lions International Festival of Creativity in France. The docuseries “A Mystery to Me” focuses on revealing the hidden toll…

EveryLife Introduces First of Kind ‘Roadmap’ to ICD Codes

To help patient advocacy leaders and their partners better understand how global health statistics codes — known as ICD codes — are assigned, updated, and revised in the U.S. health information system, the EveryLife Foundation for Rare Diseases is presenting a first-of-its-kind resource guide. The foundation created the…

MGFA Events Set to ‘Turn Awareness Into Action’ Throughout June

From contributing to an interactive activities map to taking up challenges and advocating for local proclamations, supporters are set to mark Myasthenia Gravis Awareness Month, held each June. The aim is to raise global awareness among the general public, as well as among policymakers, public authorities, industry representatives, scientists, and…

Rare Disease Day at NIH, Set for March 1, Growing Year by Year

Rare Disease Day at NIH, organized by the National Institutes of Health (NIH) and taking place on March 1, will feature panel discussions, patient stories, research updates, TED-style talks, and a presentation by a Nobel laureate recently recognized for her work on a gene editing tool. The free, virtual…

Pandemic Won’t Stop Rare Disease Day on Feb. 28

Scores of virtual events are afoot around the world to mark Rare Disease Day 2021 on Feb. 28. The activities are focused on heightening awareness about rare diseases and the hundreds of millions of individuals they are thought to affect. Patients, caregivers, and advocates worldwide will sport denim ribbons…

NORD’s 6th ‘State Report Card’ Notes Progress, Raises Concerns

While progress was made last year on newborn screening and other policy issues critical to rare disease patients, a “State Report Card” argues that many concerns — notably out-of-pocket costs for prescription medicines and access to affordable comprehensive care — still need attention. Those were the findings of the…

NORD’s Caregiver Respite Program Continues Through Pandemic

Caring for a loved one with a rare disease, especially during these uncertain times, demands significant time, attention, patience, and dedication. To help meet that need, the National Organization for Rare Disorders (NORD)’s Rare Caregiver Respite Program may be a helpful resource. The program seeks to give a…

2021 Myasthenia Gravis Survey Results

BioNews Survey Infographic

Myasthenia Gravis News conducted a survey from Feb. 11-March 28 to gain greater insight into the characteristics of the MG community and disease management. Results of the survey have now been published. Click on the image to view the infographic, and click here to read the story.