Living with an ongoing health condition comes with many challenges. One of those challenges is finding reliable up-to-date information about the condition. This is especially true with a rare condition like neuromyelitis optica spectrum disorder (NMOSD).
NMOSD is a rare autoimmune disorder where the immune system attacks healthy tissue in the central nervous system, causing inflammation in the optic nerve, the spinal cord, and the brain stem—and in some cases, other parts of the brain. NMOSD has also been known by several other names, including neuromyelitis optica (NMO) and Devic disease.
Learning more about your diagnosis and the different therapies available can be helpful when meeting with your healthcare team and making treatment decisions. With that in mind, here are five resources everyone living with NMOSD—or who has a loved one living with NMOSD—should visit.
National Organization for Rare Disorders (NORD)
NORD, or the National Organization for Rare Disorders, is a great place to start whenever you need reliable background information about a rare health condition. The NORD page on NMOSD provides an overview of the condition, including a discussion about the symptoms, what we do and don’t know about the causes, how NMOSD is diagnosed, and the drugs that are used to treat NMOSD.
RareCare
NORD also offers a program called RareCare, which provides financial assistance to people who are diagnosed with rare disorders. This can help pay for the premiums and out-of-pocket costs of managing NMOSD and medical treatment for NMOSD. The site features information on eligibility, how to apply, and where to find more information about the assistance offered and who is eligible.
National Multiple Sclerosis Society
Although multiple sclerosis (MS) is the primary focus, the webpage for the National Multiple Sclerosis Society features information on other autoimmune neurological diseases as well. Their page on NMOSD is another great starting point for background information on the condition and information on the medications used to treat NMOSD, with links to prescribing information for both approved therapies and medications that are prescribed off-label.
The page also has a section on the important differences between MS and NMOSD. The two conditions can share several common symptoms in the early stages, and NMOSD can be mistaken for or misdiagnosed as MS. However, these are two distinct autoimmune diseases that attack the body in different ways, progress in different ways, and require different approaches to treatment.
The Siegel Rare Neuroimmune Association (SRNA)
This international nonprofit organization is dedicated to supporting people who are living with rare neuroimmune disorders like NMOSD. If you want to connect with someone to ask questions about your diagnosis, this is your site. You’ll find hotlines and email addresses that can connect you with a team that can provide personalized assistance. There are also resources for finding healthcare providers who specialize in neuroimmune diseases, finding support groups, and information on clinical trials.
