Diseases Studied
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 > Myasthenia Gravis
Myasthenia Gravis (MG)
Alternative Names: Snowflake Disease
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. Generalized muscle weakness and fatigue with prolonged activity are characteristic symptoms, which improve with rest.
Research groups studying this disease
Myasthenia Gravis
Myasthenia Gravis Rare Disease Network (MGNet)
Recruiting
8201: Explore MG 2
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.
8203: Genome Wide Association Study for Muscle Specific Kinase Myasthenia Gravis
Study personnel will perform broad outreach via social media, patient advocacy groups, academic institutions to identify subjects with MUSK myasthenia who will be willing to provide verification of laboratory diagnosis, medical and family history, and a saliva sample. Subjects will be able to contact the study personnel by website, email, phone, and mail. Once inclusion criteria are met, saliva collection kit will be mailed with a return mailer. Samples will be stored in the GW biorepository until the study is complete. Saliva will then be shipped to NIH after an appropriate material transfer agreement is approved.
Conquer Myasthenia Gravis
Assists individuals affected by myasthenia gravis with programs of support, education, advocacy, and research funding.
Myasthenia Gravis Foundation of America
Aims to find a cure for myasthenia gravis (MG) and closely related disorders, creating a world without MG.
European Association of MG Patient Associations
Fosters the exchange of information among MG associations in Europe and ensures that people with MG have a voice in determining their priorities.