From knowledge to action: empowering the MOGAD community

Living with Myelin Oligodendrocyte Glycoprotein Antibody-Associated Disease (MOGAD) presents unique challenges that can profoundly affect daily life. Approximately, 1.6-4.8 per million people annually are diagnosed with this rare autoimmune disease that mistakenly attacks the protective coating around nerve fibers, impacting the brain, optical nerve and spinal cord, which means initial symptoms and presentation can vary between patients, also making it difficult to recognize and diagnose. MOGAD results in visual disability or vision loss, motor control issues and cognitive strain, and without proper intervention, symptoms can worsen over time, making awareness and education even more important.

This MOGAD Awareness Month, we believe it is crucial to highlight how awareness and knowledge of the disease supports early diagnosis, empowers patients, caregivers and healthcare professionals to advocate effectively, and helps improve the quality of life of those affected.

The importance of early and accurate diagnosis  

Early intervention is crucial to reducing the likelihood of MOGAD relapses and potential disability, which means that distinguishing MOGAD from other neurological disorders is vital for receiving appropriate care. MOG-IgG testing can rule out other conditions that present with similar symptoms like Multiple Sclerosis and Neuromyelitis Optica Spectrum Disorder (NMOSD).

A precise diagnosis allows for targeted treatment and management strategies that can significantly improve patient outcomes. The MOGAD journey is unique for everyone, and disease management often requires a diverse team of healthcare providers, including physical therapists, neuro-ophthalmologists, and psychologists.

Patients as experts in their own condition

People living with MOGAD can work with their healthcare team to monitor symptoms, enabling them to identify trends and early warning signs of potential relapses, which allows for timely interventions that can prevent symptoms worsening. Additionally, through discussions of lifestyle preferences and goals, disease management can be optimized for individuals.

Living with MOGAD can sometimes feel isolating, especially when symptoms like fatigue, brain fog and pain go unnoticed or are misunderstood, leading many patients to often refer to MOGAD as an invisible disease. The condition can also impact mental health, leading to anxiety or depression. Caregivers can help by being available to listen and provide emotional and physical support.  

UCB's Mission in MOGAD

At UCB, we are committed to supporting the MOGAD community through developing innovative solutions, working closely with the community and fostering a deeper understanding of the disease. One of our goals in 2025 and beyond is to give patients the confidence to better advocate for themselves, in both the diagnosis and disease management, to ultimately foster shared decision making between patients, caregivers and HCPs. Our mission is to provide the community with the resources and support they need to embrace knowledge as a superpower.