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.
When you’re newly diagnosed, it can be helpful to talk with other people. Join a Support Group near you or connect with a Peer Leader and benefit from the insights and experiences of people whose lives have been affected by a rare neuroimmune disorder. Learn their stories and share yours. Ask questions of those who have been there and understand what you are going through.
Find your nearest Support Group here and talk with other people affected by rare neuroimmune disorders. Also make sure to keep an eye out for upcoming Support Group Meetings on our Upcoming Events page.
Get personal, one-to-one support through the Peer Connect Program by submitting a peer request. Peer leaders can offer emotional support and share what they have learned.
These programs are not intended to provide individuals with crises or emergency support. If you or a community member are experiencing an emotional or mental health crisis and live in the United States, please call the National Suicide Hotline at 1-800-273-TALK (8255), or text the Crisis Text Line by texting “start” to 741741. If you or a community member are experiencing an emotional or mental health crisis and live outside of the United States, please Find A Helpline or call your local emergency services.