NMOSD Awareness Around the Globe

March is Neuromyelitis Optica Spectrum Disorder (NMOSD) Awareness month, and we have been sharing stories from our community and raising awareness all month long. Learn more about NMOSD on our website, find out five things you can do to raise awareness, or read one person’s experience in their own words on our blog.

March Events

We are excited to have held our second virtual storytelling event in partnership with Horizon Therapeutics on Tuesday, March 8. Watch the video to hear unstoppable stories from care partners and individuals living with NMOSD as part of the “NMOSD Won’t Stop Me” campaign. We are proud to have partnered with the leading NMOSD community organizations for this event, including The Guthy-Jackson Charitable Foundation and The Sumaira Foundation for NMO. These stories were developed in a virtual workshop with MothWorks at The Moth. The Moth is a nonprofit organization dedicated to honoring the diversity and commonality of human experience through the art of true, personal storytelling.

Earlier this month, The Guthy-Jackson Charitable Foundation gathered neurologists, other experts, and NMOSD patients together for a special virtual event: International NMO Patient Day. The webinar covered hot topics and breakthrough progress on NMOSD, including sessions on understanding NMOSD, understanding therapy, highlights of research, and more.

NMOSD In Europe

The European Alliance for Patient Access released a White Paper on Unmet Needs in Neuromyelitis Optica Spectrum Disorder in Europe. The paper included insights on the barriers and opportunities that over 10,000 NMOSD patients face as they take steps to accessing and taking control of their care in Europe. The top five needs included: lack of awareness, shortage of specialists, outdated treatment guidelines, inequitable access to innovative treatments, and inadequate support for caregivers. The report is available in English, Dutch, French, German, Italian, Spanish, and Swedish.

There is also a survey that aims to better understand the experiences of those living with NMOSD, and those who offer care to someone with NMOSD, in Europe. The survey asks about the pathway to diagnosis and ongoing care, the physical and emotional impact of the condition, and the resources currently available. You may complete the survey in German, Spanish, French, Italian, or English between now and 31 March 2022. Please note that this survey is not being administered by SRNA.

Share Your Story

We want to hear from you. Whether you want to share a few words or an entire essay, we invite you to share your story to help raise awareness. How has being a part of a rare disorder community impacted you? Whether you or your loved one has NMOSD or another rare neuroimmune diagnosis, we encourage you to share your experience in SRNA’s Community Stories survey.

The “NMOSD Won’t Stop Me” campaign with Horizon Therapeutics continues with another opportunity for those living with NMOSD and their loved ones to submit stories about their disease journey. As part of this effort, Christine Ha, the first blind contestant on MasterChef and winner of the show’s third season is sharing her NMOSD story and hopes to hear yours. Learn more and get involved at NMOSDWontStopMe.com.