XLH Awareness Day–23 June 2021

XLH Awareness Day was 23 June 2021. This year, we were fortunate enough to be able to host a morning tea with the Parliamentary Friends of Medicines in Canberra. Dr Tony Lafferty and Dr Peter Simm provided an overview of the clinical diagnosis of XLH and the burden of the disease.

In addition, our President, Sandy, shared her story while other patients were able to share their journey and ask questions of Members of Parliament.  Ms Maria Vamvakinou MP also made a 90 second Ministerial statement in Parliament about XLH to promote awareness of the disease on the day.

This was a wonderful opportunity for members of XLH Australia to network and meet key Members of Parliament. It was also a significant opportunity for us to raise awareness of XLH and its impacts on daily life.