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MG PATIENT REPORTED OUTCOME SURVEY
The “Myasthenia Gravis Patient Reported Outcome Survey” Research Project is now ready for patient input!
MESTINON SHORTAGE
The supply of the 60 mg dose of Mestinon is expected to be disrupted until late August.
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.