The Rare Diseases Clinical Research Network is an NIH-funded research network of 20 active consortia or research groups working to advance treatment for diseases that are rare. Use the search tools on this page to find the diseases we currently study. You can reach out to the indicated consortia or research groups for more information on those diseases and studies underway.
This network focuses on clinical research and does not generally support clinical care outside of research activities. To learn about other rare diseases, please visit the Genetic and Rare Diseases Information Center (GARD), which is an NIH program that helps the public find reliable information about rare and genetic diseases. Their staff are specialists. Contact them at 1-888-205-2311 or email GARDinfo@nih.gov.
All Diseases > Ocular Myasthenia
Ocular Myasthenia (OMG)
Disease Category: Myasthenia Gravis
A neuromuscular disorder caused by an autoimmune response which blocks or damages acetylcholine receptors in muscles. Affected receptors cannot properly receive nerve signals, impacting voluntary muscle contractions. Muscle weakness and fatigue only impact the eyes, causing eyelid drooping (ptosis) and double vision (diplopia).
Research groups studying this disease
Myasthenia Gravis Rare Disease Network (MGNet)
Designed to better understand disease characteristics and identify treatment predictive and responsive biomarkers for myasthenia gravis. A total of 300-400 participants with confirmed diagnosis of myasthenia gravis are expected to be enrolled in the study.
Assists individuals affected by myasthenia gravis with programs of support, education, advocacy, and research funding.
Aims to find a cure for myasthenia gravis (MG) and closely related disorders, creating a world without MG.
Fosters the exchange of information among MG associations in Europe and ensures that people with MG have a voice in determining their priorities.