Feedback from the day reflected the warmth and generosity offered by an amazing group of Specialists who shared their knowledge and compassion. Conversation from these Doctors included helping us to understand how Rituximab works, why there is a tightening guideline to IVIg prescriptions and why patients should not be fearful, what is Therapeutic Plasma Exchange, and can it be a possible option for some patients.
New therapies were hinted at and included subcutaneous IVIg for home administration, bone marrow transplant in Myasthenia and gene therapy research. All these are a way off for now, but it was reassuring to think of possibilities for the future.
Stephen Reddel reported that the eNID project will progress and VIC, NSW and Qld will participate in the initial trials. The generous financial contribution from the MG Community was recognised and was clearly a determinant in the project progressing. He spoke of the importance of growing the MAA and the State Associations. Gathering data is critical to progress.
The Queensland Patient Survey has again been analysed and its value is clear. This project is on-going and additional people were recruited on the day.
Nicole Millis, CEO of Rare Voices and key speaker, was described as an ‘inspirational person’. She gave of her time to attend, to listen, to encourage and to provide solutions around how challenging objectives involving government policy change can be pursued. The MAA and MGAQ felt the strength of the partnership they share with Rare Voices.