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Interested in Joining a Consumer Advisory Council?
What’s next? Alexion is responding to the findings of the recently issued Infographic (found below) by establishing a Consumer Advisory Council to guide the development of tools to improve how the healthcare system supports people living with gMG in Australia. SenateSHJ, a health communication and research agency, is supporting Alexion with this work. Would you be interested in…
Social, personal and professional Impacts highlighted in lived experience survey
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,…
Expanding Treatment Options – January 2025
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. New treatments aim to fill these gaps, providing more options and hope for people with this challenging condition. Whether you’re newly diagnosed or have…
Exploring Lived Experience of People with a Myasthenia Condition
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…
Proudly Supporting MGBase
The bold concept to have a physician captured, longitudinal data base reflecting real time evidence about treatment benefits for people with Myasthenia Gravis was first presented to the Myasthenia patient group in December 2016. The Myasthenia community committed to raising $40,000 to support this work. The project was known as eNID. At the 2017 Conference…
Rare Diseases Day 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…
Framing the PBAC Submissions and why your participation has been impactful.
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. The PBAC meeting takes place in March, and we will know the…
RESEARCH SUCCESS! Doctor Siriratnam shares his appreciation.
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…
Last Chance to Participate
Last opportunity to participate in MG and Work survey – closing 17thFebruary 2025 The MAA has partnered with the University of the Sunshine Coast to conduct research on Myasthenia Gravis and people’s ability to work. The research team is led by Dr. Michele Verdonck. MG can significantly affect people’s ability to work. Little is understood…
Last chance to make your submission to PBAC!
This is a final reminder that the patient/consumer submissions to PBAC (Pharmaceutical Benefits Advisory Committee) close at 11pm on Wednesday 29 January 2025! Make your submission(s) via the online form here. These submissions will contribute to the PBAC meeting in March where they will consider 4 new treatments for Myasthenia Gravis (MG) being available and accessible in…