Rare Disease Week is a multi-day event, hosted by the Rare Disease Legislative Advocates (a program of the EveryLife Foundation for Rare Diseases), that brings together rare disease advocates from across the country to make their voices heard. Participants are educated on policy proposals impacting the rare disease community and provided opportunities to advocate for… Read more »
Posts Categorized: blog
From Our Support Group Leaders

Explaining myasthenia gravis (MG) to others can be challenging. We asked our support group leaders how they explain MG to people who are unfamiliar with the condition. Kelly Aiken There are two versions of this autoimmune neuromuscular disease. One version is ocular which can cause symptoms such as ptosis, double vision, and blurry vision. The… Read more »
Virtual Event – What does MG Care look like in 2045?
Henry J. Kaminski, MD is the Meta A. Neumann Professor of Neurology at George Washington University in Washington DC. Dr. Kaminski has performed research in MG for over 25 years with continuous support of federal and non-profit organizations. In 2019, Dr. Kaminski established as principal investigator, the NIH Rare Disease Clinical Research Network site dedicated… Read more »