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Keeping track of your life when managing Myasthenia
Association Management committee members regularly suggest that people keep a diary of their symptoms, medications, lifestyle impacts etc. in preparation for their visits to the Doctor.
Consumer Research Survey – IVIg
NPS MedicineWise is looking for people who have been prescribed immunoglobulins (antibodies) as part of their treatment to take part in a short survey online and/or an in-depth interview over the phone.
Discussion Paper Regarding COVID VACCINATION
The consensus of the Doctors is that ALL patients with Myasthenia should be vaccinated.
ADVOCACY TOOLKIT
With the support of Terumo BCT, a tailored public affairs toolkit has been developed entitled “How can patient organisations ensure their voices are heard in public policy?” The aim is to help Australian patients in their advocacy efforts.
NDIS SECOND STAGE
In the latest partner event with Rare Voices Australia, the MAA has participated in a forum to discuss how the NDIS is functioning for people with rare disease.
MAA SEEKING VICTORIANS RECEIVING THERAPEUTIC PLASMA EXCHANGE
The Myasthenia Alliance Board are seeking out Victorians who access Therapeutic Plasma Exchange as a regular or intermittent treatment option to help them better understand patient experiences.
MAA 2019-2020 ANNUAL REPORT
The Myasthenia Alliance Australian 2019-2020 Annual Report is available.
COVID-19 VACCINATION QUESTIONS?
The consensus of the Doctors is that ALL patients with Myasthenia should be vaccinated.