Changing the Way We Care for gMG: Why Patient Choice and Innovation Must Lead the Way

From attending this year’s European Academy of Neurology (EAN) Congress in Geneva, it’s clear the neurological community is facing an important inflection point. For a long time, treating generalized Myasthenia Gravis (gMG) was very difficult, with patients facing long diagnostic and treatment journeys – and then often managed with a ‘one-size-fits-all’ approach. At the same time, healthcare policies rarely matched the actual, daily challenges that families face at home.

How new frameworks are driving change 

What is new today is that global policymakers are listening. Frameworks such as the World Health Organization’s Intersectoral Global Action Plan (IGAP) and the World Health Assembly (WHA) Resolution on Rare Diseases are shifting the focus beyond just clinical data to how people actually feel in their everyday lives. These frameworks call for more inclusive health systems, better tracking of the lived experience, and coordinated care that adapts to the person instead of just the disease. 

At the same time, international, regional, and national care and treatment guidelines are progressively being updated for gMG. In this context, listening to the real-world needs of patients and caregivers is no longer just good practice; it directly drives these new global commitments. An example of such a program is our Rethinking Myasthenia Gravis initiative, a joint project between UCB and the European Brain Council. Built to pinpoint gaps in care and deliver lasting improvements for the gMG community, this program successfully translates patient insights into more responsive, everyday healthcare systems. We have a real opportunity to build healthcare pathways that truly put the patient first. 

Listening to the Voices of Those Living with gMG

No two people experience gMG in the exact same way. One person might struggle with severe muscle weakness that makes it hard to swallow, breathe, or walk. Another might deal with frustrating eye problems like double vision or drooping eyelids.4 Because the disease is so unpredictable, the patient’s own experience must be the starting point for everything we do.
By engaging directly with those who live with these conditions, their caregivers, and healthcare providers, we can tailor our strategies and focus on what matters most to people affected. True medical progress cannot be measured just by clinical data. We need to listen to how people living with gMG feel in their everyday lives and use their feedback to improve how healthcare systems work.

Living Patients Real Choices 

I was privileged to attend the UCB sponsored European Brain Council side event at EAN ‘Rare Neurology Meets Global Policy’ which brought together global policy representatives, scientific societies, clinicians, patient advocates and industry stakeholders to discuss how global policy commitments under IGAP and the WHA Rare Disease Resolution can be translated into concrete improvements in rare neurology care pathways, using myasthenia gravis as a practical case example.

The session showed how important it is to turn global policy into real, everyday action at a country level. By focusing on common gaps in the myasthenia gravis care journey, such as delayed diagnosis, fragmented pathways, and uneven access to specialist care, the discussion highlighted how we can optimize care through practical solutions. These solutions echo the framework of our Rethinking Myasthenia Gravis initiative, which focuses on earlier symptom recognition and referral, integration of patient reported outcomes, expanding access to specialist centers, and providing coordinated, multidisciplinary care. These steps will help reduce the overall treatment burden, ease the broader socioeconomic impact and lift some of the informal care strains from families.

Turning Commitments into Action

Bringing doctors, policymakers, and patient organizations together at EAN plays a significant role in turning global health initiatives into practical, everyday solutions. We all offer different perspectives but ultimately share a common goal: keeping the patient voice at the center of our work. This point of genuine alignment is the foundation for how we move forward – working together to translate shared intent into meaningful, patient-centered change.