Shining a light on myasthenia gravis: UCB marks MG Awareness Month and previews ‘Faces of MG’

June marks Myasthenia Gravis (MG) Awareness Month, a dedicated time for raising awareness about this rare, chronic, autoimmune, neuromuscular condition. During this month, organizations and individuals unite to educate the public, promote research, and provide much-needed support to those affected by MG.

Catalyzing Change: The transformative Power of MG Awareness Month
One of the primary goals of MG Awareness Month is raising awareness. Educating the public about myasthenia gravis, its symptoms, diagnosis, and available treatments is essential for improving understanding and providing assistance to those affected by this condition. Additionally, supporting patients and their families is crucial. Organizations across the globe offer valuable resources, support groups, and services to help individuals with MG and their loved ones navigate the challenges associated with the condition.

Advocating for research is another critical aspect, as funding is essential to discover new treatments and, ultimately, a cure for MG. Finally, promoting timely diagnosis is vital, as early diagnosis is key to effective management and treatment, helping to improve patient outcomes and experiences.

Illuminating stories: Introducing the ‘Faces of MG’ Campaign
This year during MG Awareness Month, we're excited to preview our new ‘Faces of MG’. This initiative aims to illuminate the stories of individuals connected to MG through striking commissioned photography and powerful recorded testimonials of people living with MG, advocates, healthcare professionals and UCB representatives to paint a personal picture of the challenges and realities of MG.

At UCB, we are committed to supporting the MG community and fostering engagement and encouragement for those living with MG. The ‘Faces of MG’ campaign will raise awareness to help make this often-invisible disease more visible, highlight the MG journey and the daily life impacts of disease. By shining a light on the incredible collaborative efforts required for effective disease management and treatment, we will bring to life personal stories that resonate and inspire.

Personally, I find it meaningful to be able to connect a face to a story and to directly learn about the real-life experiences from people within the MG community. This campaign represents more than the faces of those living with the disease and extends to showcasing all those who support them. We stand in solidarity with the MG community and aim to bring hope to those living with this life-changing disease to show them that they are not alone and that many people around them are passionate about helping them to live fulfilling lives. Our goal is to ensure that every person with MG feels uplifted and empowered, knowing there are countless individuals and organizations dedicated to advocating for their wellbeing.

Bridging Communication Gaps: Insights from the ENGAGE educational project
In alignment with our commitment to the MG community, UCB is proud to highlight a pivotal study titled “What Patients Don’t Say and Physicians Don’t Ask: A Needs Assessment in MG Integrating Patient and Healthcare Professional Perspectives”. This publication marks the first phase of the ENGAGE project, dedicated to enhancing the dialogue between healthcare professionals (HCPs) and patients through innovative approaches like a virtual reality experience aimed at fostering empathy among HCPs.

This needs assessment indicated general alignment between patients and HCPs on MG symptoms. However, the study underscores communication gaps, where HCPs often expect patients to voluntarily share their symptoms and challenges, while patients anticipate that HCPs will ask the right questions. It reveals differing priorities in understanding the impact of symptoms on daily life and emphasizes the need for improved shared decision-making. By adopting more effective communication strategies, the dialogue between patients and HCPs can lead to more personalized and effective care, a goal that resonates with the objectives of our ‘Faces of MG’ campaign.

Join us this June in celebrating the resilience and strength of the MG community. Together, we can make a difference and continue to advance the understanding and awareness of myasthenia gravis. We look forward to sharing more on the ‘Faces of MG’ campaign in the coming months and in the meantime discover how you can help make a difference in the lives of those affected by MG with MGFA’s MG Awareness Month Resources.