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UPDATE to Discussion Paper Regarding COVID VACCINATION

An update to the COVID-19 Discussion Paper

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.

COVID-19 VACCINATION QUESTIONS?

The consensus of the Doctors is that ALL patients with Myasthenia should be vaccinated.

UPDATE ON RITUXIMAB

A Parliamentary Inquiry has commenced into new drugs and novel medical technologies.

IMPORTANT MESSAGE FROM MAA MEDICAL ADVISORY BOARD

Anybody who has previously had or currently has a thymoma should take extra care protecting against exposure to COVID 19.

COVID-19 SUGGESTED PRECAUTIONS

As people with a chronic illness, particularly inclusive of those who are immune suppressed, the Myasthenia Gravis community should be very familiar with the precautions needed to stay safe from infections.

National Strategic Action Plan for Rare Diseases

Susan White, MAA President, is delighted to be attending the Parliamentary Event to be held in Canberra, on Wednesday, February 26th in celebration of Rare Diseases Day.

Friendly Reminder to All Travellers

New information about medications that can worsen symptoms in patients suffering from myasthenia gravis (MG) has been published on the MAA website. This list is designed as an aid to assist guiding therapeutic decisions for MG patients and their doctors.