News

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.

People may recall completing a survey way back in mid-2022 when researcher Dr Pakeeran Siriratnam was keen to understand more about our Covid experiences. He was delighted when 229 people successfully responded. After much time and effort Dr Sisriratnam’s paper was published in a prominent journal just prior to Christmas. He has responded to the MAA request for feedback.

A big thank you to everyone who attended and participated in ou

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