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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…
Time for your Submission to PBAC
A big thank you to everyone who attended and participated in our webinar on 15 January. For those who registered but couldn’t join at the time, please check your emails for a link to the recording. If you haven’t done so already, now is the time to make your submission to PBAC about new treatments for Myasthenia…
Last chance! MAA webinar registrations are closing
Don’t hesitate for one more minute! Register here for the Myasthenia Alliance Australia (MAA) webinar to learn about new treatments for generalised Myasthenia Gravis. You may be offered new treatments in the future and this webinar will help you understand what these treatments are and how they may benefit you. The webinar will be held at 5:30pm (AEDT)/4.30pm (AEST) on Wednesday 15…
Register NOW for the MAA webinar on new treatments for Myasthenia!
It is a new year and we have a once in a generation opportunity for new treatments for Myasthenia Gravis! The Pharmaceutical Benefits Advisory Committee (PBAC) will assess 4 new treatments for generalised Myasthenia Gravis (gMG) at its meeting in March 2025. You can make a personal submission by 29 January 2025 highlighting your lived experience as a Myasthenia patient to add…
PBAC submissions for Rystiggo® (Rozanolixizumab) for all Myasthenia Gravis patients
The Australian Myasthenia community have a once in a generation opportunity to support new treatments for generalised Myasthenia Gravis (gMG) which are listed on PBAC’s March 2025 agenda! The Myasthenia Alliance Australia (MAA) encourages Myasthenia patients and your carers or families/friends to consider making a personal submission highlighting your lived experience by 29 January 2025.…