Living with Neuromyelitis Optica Spectrum Disorder (NMOSD) can feel overwhelming. Whether you’re newly diagnosed, seeking answers, or caring for someone who is — NMOSD Africa exists to connect, educate, and stand with you.
To find patients, educate patients, and connect patients.
An Africa where every person living with NMOSD is diagnosed earlier, supported effectively, and connected to a thriving community of care.
NMOSD Africa began with a simple but powerful question: “Where are the patients?” Across Africa, many people living with NMOSD face more than a rare disease. They face delayed diagnosis. Limited awareness. Isolation. Uncertainty. And a lack of connection to others who understand their journey.
For many patients, the diagnosis is only the beginning. Finding accurate information, accessing support, and connecting with a community can be just as challenging as living with the disease itself.
NMOSD Africa exists to change that.
We are building a patient-centered community dedicated to raising awareness, promoting earlier diagnosis, empowering patients and caregivers through education, and strengthening support networks across Africa.
We believe that every patient deserves access to information, community, and hope.
By bringing together patients, caregivers, healthcare professionals, advocacy organizations, and strategic partners, we are working to create a future where no NMOSD patient feels invisible, unsupported, or alone.
That question became a mission: build the awareness, the community, and the support system that African NMOSD patients deserve — and have never had.
Founder & Executive Director, NMOSD Africa
NMOSD Africa was born from Dr. Lungi Sibanda’s determination to turn a personal challenge into a source of hope for others.
Following her own NMOSD diagnosis, she embarked on a journey to better understand the disease, connecting with specialists, patient advocacy organizations, and rare disease communities around the world.
Through participation in international NMOSD and rare disease summits, she discovered that while awareness, education, and patient support networks were growing globally, many African patients remained disconnected from the information, resources, and community that could help them navigate life with NMOSD.
Rather than accepting that reality, she chose to help change it.
Driven by a passion for patient empowerment, health equity, and community building, Dr. Sibanda founded NMOSD Africa to ensure that patients and caregivers across Africa have access to education, support, connection, and hope.
Today, she works alongside healthcare professionals, advocacy organizations, government stakeholders, and industry partners to advance awareness, promote earlier diagnosis, and strengthen support for people living with NMOSD.
Her vision is simple:
A future where no NMOSD patient feels invisible, unsupported, or alone.
“If we can find the patients, educate the patients, and connect the patients, we can change lives.”
— Dr. Lungi Sibanda
UNDERSTANDING NMOSD
Neuromyelitis Optica Spectrum Disorder is a rare autoimmune condition where the body’s immune system mistakenly attacks the optic nerves and spinal cord. Early diagnosis changes everything.
NMOSD can affect:
Watch for: sudden vision loss or eye pain, weakness or numbness in the limbs, severe fatigue, balance issues, bladder or bowel changes, or persistent nausea and hiccups. If any of this sounds familiar, please speak to a qualified neurologist — early action matters.
FIND YOUR PEOPLE
Wherever you sit in the NMOSD journey, there’s a place for you here.
A new diagnosis brings a flood of questions. You’re not meant to find the answers alone — connect with information, treatment guidance, and people who truly understand what you’re living through.
Caring for someone with NMOSD takes heart — and information. We equip spouses, parents, siblings and friends with practical guidance, emotional support, and a community that has walked this road too.
NMOSD remains under-recognised across African healthcare settings. We partner with clinicians on training, referral pathways, and awareness — so patients are diagnosed sooner and supported better.
ADVOCAY & AWARENESS
Every patient deserves to be seen, heard, and supported. Our advocacy work pushes for the systems that make that possible.
STAY CONNECTED
From educational webinars to our Annual Patient Day, NMOSD Africa events bring patients, caregivers and clinicians together — in person and online.
Details are being finalised. Join the mailing list and be the first to know.
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