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The MAA team are headed to Canberra!
Once again, it is time to celebrate with Rare Voices Australia (RVA) as they host a parliamentary event in honour of rare diseases day 2026. It is a privilege to have myasthenia gravis represented at this significant event and we express sincere appreciation to RVA for our inclusion. This meeting allows the MAA to speak…
VALUE-MG Study Update
Thank You to the Myasthenia Gravis Community The VALUE-MG study has officially reached its recruitment target, with 216 people living with myasthenia gravis participating across five hospital sites in Australia. This important research is helping build a clearer picture of how myasthenia gravis affects people’s health, daily activities and work over time, and how these…
Supporting MG Awareness with “Art with Heart” 2026!
The Myasthenia Alliance Australia (MAA) is proud to continue its important work during International June MG Awareness Month 2026. We need your help now to find items for our Art with Heart Auction to raise awareness of MG and build resources to support the important work of the MAA. Get Involved and Make an Impact The first step…
Participate in a unique MGAQ research project: Share your experience about how heat affects you
Many people with myasthenia gravis report that heat and hot weather exacerbate their symptoms and impact their daily lives. However, little research has been performed to understand the exposures that trigger worsening symptoms or the broader impacts on daily life for individuals with myasthenia gravis. The Myasthenia Gravis Association of Queensland (MGAQ) is collaborating with…
Something big is coming for our MG community.
Look out for our new research project launching in the new year! The Myasthenia Gravis Association of Queensland is proud to share that we are working with Queensland University of Technology to explore Heat Sensitivity in People with Myasthenia Gravis. With input from leading specialists, including Dr Stefan Blum, we are developing a survey to gather…
Nursing Excellence: The Vital Role of nurses in MG care
Nurses play a central role in supporting people living with myasthenia gravis, providing not only clinical care but also guidance, advocacy, and reassurance at every stage of the journey. In this recent Nursing Excellence webinar, Nurse Practitioner Jenny Stofmeel shared valuable insights into how nurses can support individuals with MG through personalised care, ongoing monitoring,…
Rare Disease Connect in Neurology
Rare Disease Connect in Neurology – connecting with fellow patient organisations in Barcelona Rare Disease Connect in Neurology (RDCN) is an annual meeting that includes both healthcare professionals and patients. I was very honoured to be invited and sponsored by UCB to attend the 5th RDCN in Barcelona on behalf of the MAA and the…
Last chance to register! Multi-stakeholder webinar on Myasthenia research updates
Last chance to register! Multi-stakeholder webinar on Myasthenia research updates The Myasthenia Alliance Australia is partnering withOPTIMAL NHMRC Centre for Research Excellence in improving immunoglobulin use. There is just 1 week to go until our informative webinar on Myasthenia Gravis! Date: Monday 24th November 2025 Times: Why attend? As a patient, you can learn more about current research and…
Register now! Multi-stakeholder webinar on Myasthenia research updates
The Myasthenia Alliance Australia is partnering with OPTIMAL NHMRC Centre for Research Excellence in improving immunoglobulin use, and we invite you to join our upcoming webinar on Myasthenia Gravis. Date: Monday 24th November 2025 Time: This session will bring together clinicians, researchers, and people with lived experience to discuss current understanding of Myasthenia Gravis, insights from national research on immunoglobulin…
EXPERT INSIGHTS: Myasthenia Gravis and symptom assessment tools to improve outcomes
How do we truly understand what life is like for someone living with myasthenia gravis? In this insightful webinar, Dr Carlo Antozzi, Senior Neurologist and Head of the Neuroimmunology and Neuromuscular Diseases Unit at the Besta Neurological Institute in Milan, takes us inside the evolving world of MG care – one where patients’ voices are…