Rare Disease Day Parliamentary Event

Posted on Tuesday, 19 March 2019

Thanks to sponsorship from Rare Voices and MGAQ Inc., Susan White was able to accept a personal invitation from Nicole Millis, CEO of Rare Voices, to attend this luncheon. It was a fantastic opportunity to meet the full Rare Voices team, to see Nicole passionately advocating for people with a rare condition, to flag Myasthenia Gravis with interested Politicians and to experience the issues faced by others also managing a rare condition.

Susan had a private interview with MP Mike Freelander in the morning followed by an introduction to Health Minister Greg Hunt during lunch. A greater discussion was held with Minister Hunt's Senior Advisor. MPs Trevor Evans, John Alexander and Mike Freelander sought a conversation during lunch and educational materials were shared.

Susan raised the issue of seeking to have Rituximab considered for inclusion on the PBS for people with Myasthenia Gravis. With an election looming, the Myasthenia community is strongly encouraged to continue raising this issue via questions put forward by as many Federal Members as possible. Please consider if you can help!