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Late last year, many people in our community participated in a survey conducted by Alexion Pharmaceuticals about the impact of generalised Myasthenia Gravis (gMG) on daily life and experiences with healthcare professionals. 
 
The survey found gMG has a significant impact on people’s social, personal and professional life with one in two retiring early. Restricted social life, loss of independence and the ability to plan activities were the most reported impacts.

Living with MG means navigating a complex treatment journey. While we’ve come a long way with effective therapies like steroids, immunosuppressants, IVIG, and surgery, not all patients respond the same way.

The MAA has partnered with the Edith Cowan University to conduct research on exploring the lived experience of people living with Myasthenia Gravis. The research team is led by Associate Professor Christopher Kueh.

Our project focuses on understanding the experiences of individuals living with Myasthenia Gravis (MG) in Australia. We want to know about the journey of getting diagnosed with MG, living with the condition, and what a typical day looks like for those affected. 

RARE DISEASE DAY | FRIDAY 28 FEB. 2025

Today is our special day as the world recognises people with a rare disease such as Myasthenia. The MAA share the 2025 logo with you and perhaps you will share this email with others. For the rare disease sector there are challenges to gaining comprehensive and equitable care and to being understood. Celebrating today and telling others why you are celebrating is a step towards a better life for us all. Do embrace this day on behalf of everyone who travels life with a rare disease.

Thank you to everyone who joined us for the webinar about new treatments and Pharmaceutical Benefits Advisory Committee (PBAC) submissions, and to all of you who made a submission and shared your lived experience and treatment preferences as part of the PBAC process.