Advocates join forces to create, celebrate World NMOSD Awareness Day
Led by Brazil nonprofit, organizations globally back March 27 for inaugural event
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March is NMOSD Awareness Month, and advocates around the world are working to educate others and raise the profile of neuromyelitis optica spectrum disorder (NMOSD), also known as neuromyelitis optica or, simply, NMO.
A major international initiative this year is to name March 27 as World NMOSD Awareness Day. This specific day for NMOSD has been recognized in Brazil since 2022, and NMO Brasil is leading an international coalition of NMOSD advocacy organizations to celebrate this date in countries beyond the South American nation.
Among the organizations involved are three U.S.-based nonprofits: the Patient Health Alliance in Colorado, the Siegel Rare Neuroimmune Association (SRNA) in Pennsylvania, and the Sumaira Foundation (TSF) in Massachusetts. Also joining are the Brazilian Academy of Neurology, NMO France, and the European Charcot Foundation.
World NMOSD Awareness Day “highlights the importance of awareness as an essential tool to shorten the path to diagnosis and ensure timely medical intervention, reduce irreversible disabilities, and promote empathy and collective support,” NMO Brasil said in an organization press release.
As part of this year’s initiatives, a dedicated World NMOSD Awareness Day website — featuring a green ribbon as the awareness symbol — was launched, providing information about the disease, the importance of ongoing awareness, and how to participate throughout the month.
In addition to the well-established hashtag #NMOSDAwarenessMonth, advocates are encouraged to spread the word on social media using the new hashtag #WorldNMOSDDay.
“Through this collaborative effort, we can develop joint activities around this date and, in the future, move toward a joint declaration supporting the official recognition of World NMOSD Awareness Day,” NMO Brasil said in an email to Neuromyelitis News.
Events slated for NMOSD Awareness Day – and the entire month
Over the course of the month, the Patient Health Alliance will be offering events that include educational seminars and art workshops targeted toward people living with NMOSD and related disease. The organization also offers support groups for young adults, women, and men.
“Raising awareness of NMOSD is critical. Education across clinicians, advocates, patients, caregivers, and families leads to more accurate and timely diagnosis, improved treatment decisions, and better long-term outcomes,” Cori Woolf, Patient Health Alliance’s director of patient advocacy, wrote in an emailed statement to Neuromyelitis News. “Earlier recognition can prevent unnecessary disability and reduce the emotional and financial burden that often accompanies delayed diagnosis.”
As in years past, other U.S.-based NMOSD advocacy groups are also jumping into the action. The SRNA is hosting a virtual community meetup on March 20, and is also encouraging members of the community to share their stories online and contact their elected representatives. TSF has been sharing education and advocacy resources on its Facebook page.
Awareness transforms realities. … It paves the way for research, expands access to treatments, and strengthens community support networks.
NMOSD is a rare autoimmune disorder in which the immune system attacks healthy cells in the brain and spinal cord. The disease is marked by relapses or flares that often lead to long-term symptoms, which can substantially impair patients’ functionality and limit life quality.
Treatments are available that can help reduce flares and prevent long-term disability. However, because NMOSD is so rare, it is often not diagnosed correctly, frequently being mistaken for other disorders like multiple sclerosis. Incorrect diagnoses lead to delays in proper treatment, which can translate into avoidable long-term disability for patients.
By increasing awareness about NMOSD, advocacy organizations hope not only to help raise funds for research but also to make this little-known disease more visible to healthcare providers and the world at large.
“Awareness transforms realities,” NMO Brasil said in the release. “It shortens the path to diagnosis, reduces invisible suffering, turns doubt into information and judgment into empathy. It paves the way for research, expands access to treatments, and strengthens community support networks.”
