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.
Additionally, we recently launched the Myelitis Helpline, an online resource that provides specific knowledge and help to our community, including those who have recently been diagnosed, or who have questions at any point after the onset of a rare neuroimmune disorder. You’ll answer a brief survey so the results you receive will be specific to your needs. You’ll also have the opportunity to ask detailed questions about your individual situation, and we’ll respond if you need more help or information.