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Turning awareness into action for Myasthenia Gravis Awareness Month

Posted by
Manuela Maronati, Rare Diseases Europe


Every day, over 700,000 people across the globe live with generalized myasthenia gravis (gMG), a rare disease that most people have never even heard of. gMG occurs when the body’s immune system mistakenly attacks the connections between nerves and muscles. It causes weakness in the muscles that control some of our most basic movements, like seeing, walking, talking, breathing and even smiling. The multitude of symptoms contribute to the emotional toll and daily struggles that people living with this disease face.

Despite this, like many rare diseases, there is a lack of wider knowledge around gMG. This is why it’s especially important that we join forces with the gMG community to recognize MG Awareness Month this June and support the movement to “Turn Awareness into Action.” At UCB, we are committed to driving real change for people living with gMG.

Prioritizing collaboration with patients
In pushing for progress in gMG, early collaboration with the patient community is essential. This collaboration can take many forms – from working with patients to shape clinical trials, to fostering compassionate care and integrating the patient voice in research. Patients are the experts in living with their condition – by drawing on their lived experiences we can ensure that the patient voice is at the heart of our work to help improve treatment and care for those with gMG.

An example of UCB’s collaboration with the community is our partnership with expert patients to bring the lived experience of gMG to the attention of the medical community with peer-reviewed publications to highlight the real-life experiences of people living with gMG and strengthen the bond between the scientific and MG patient community. In gMG, the patient population is small and knowledge on the disease is limited, meaning amplifying the patient voice is essential to improving outcomes for those living with this often debilitating disease.

Patient quality of life can often be underestimated
gMG is a complex disease with a range of symptoms – as a result, several aspects that impact patient quality of life can often be underestimated, including fatigue, emotional impact, and difficulties in swallowing or speaking. UCB sought to address this through collaboration with the patient community which culminated in the development of the MG Symptoms PRO tool, which provides a quantifiable means of assessing MG symptoms that are most relevant to patients, which are not included in other PRO measures like physical fatigue, aligning with patients' lived experiences and paving the way for the development of enhanced management strategies.

Innovating to bring MGS-PRO tool to life has been crucial in helping address these issues. By approaching these challenges from a holistic, patient-centered lens, we’ve been able to assess many symptoms that matter to people living with gMG and help understand the impact of gMG on their daily lives.

However, transformational change requires more than innovation alone. We see meaningful progress when there is shared purpose, a unified approach, and ongoing collaboration and dialogue between stakeholders.

At UCB, we’re focused on reshaping the MG landscape, and recognize that collaboration with the MG community can accelerate that mission. Through listening, learning, and engaging, we’re committed to accelerating the development and access to life-changing treatments for people living with MG, turning awareness into action. Join us in making a difference by getting involved in MG Awareness Month!

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