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 with Federal politicians about the challenges of rare disease care and to bring awareness of our unique condition and many unmet needs.
With so many new medications going through the PBAC process and with many HTA reforms to be implemented it is important that the myasthenia community concerns are heard. More information from this day will be shared following the event.
Susan White, MAA Chairperson, is keen to meet with people from this region of Australia and to learn more about your issues. Please join Susan and MGAQ Committee member Donna Formosa, on Sunday March 1st at 2pm.
Please let us know that you can attend by calling 1800 802 568. We are to meet at the National Arboretum Cafe, Forrest Drive, Molonglo, Canberra. Everyone is welcome and we look forward to sharing time together.