Overwhelmed, in a panic, or don’t know where to start?
We know firsthand how difficult being diagnosed with a rare, immune-mediated demyelinating disorder of the central nervous system (brain, spinal cord, and optic nerve) can be. We know how frightening and isolating it be can when given a diagnosis of a rare neuroimmune disorder — acute disseminated encephalomyelitis, acute flaccid myelitis, MOG antibody disease, neuromyelitis optica spectrum disorder, optic neuritis, or transverse myelitis.
If you haven’t done so already, please take a few minutes to become a member of the Siegel Rare Neuroimmune Association. There is no cost to do so and we will keep you informed of the latest information on treatments, research and management of rare neuroimmune disorders as well as our programs.
Being newly diagnosed with a rare neuroimmune disorder is hard, but please know that we are here for you. You are not alone. We are here to help. We are here to guide you through it all and to support you.
NEWLY DIAGNOSED
Learn about your diagnosis
When you’re diagnosed with a rare neuroimmune disorder, what you do on day one matters. It’s important to learn as much as possible about your rare neuroimmune disorder today so you can discuss treatment options with your doctor immediately. All the information listed on our website is accurate, approved by medical experts, and up-to-date.
Information about rare neuroimmune disorders can be found on our Disease Information page. For detailed disorder-specific information, please visit the Acute Disseminated Encephalomyelitis, Acute Flaccid Myelitis, MOG Antibody Disease, Neuromyelitis Optica Spectrum Disorder, Optic Neuritis, and Transverse Myelitis sections.
Also, take the time to navigate through our Resource Library to find the answers you are seeking and learn about the latest research. You can easily filter content specific to your needs, including disorders, acute therapies, symptom management strategies, advocacy, caregiving, quality of life concerns, and scientific research. We have over 300 resources for you to explore.
