The Metabolic Dietary Disorders Association headed to Australia’s Parliament House in the lead up to Rare Diseases Day on 28 February. Together with Rare Voices Australia, and other important representative groups of rare diseases from across Australia, we were there to raise awareness about the challenges and inequities people with rare diseases, such as Inborn Errors of Metabolism.
Over the past few years, we’ve seen some great advancements in the treatment and funding for those with IEMs – but there is more work to do! The MDDA will continue to advocate for the 1600 Australians who live with a protein IEM and their families. This event provided an opportunity to raise important issues for our community such as access to #Kuvan for all responsive patients, consistent and reliable access to #PBS products, Newborn Screening additions for IEMs not diagnosed by the current tests, and actions required by the MDDA in preparation for the review of treatments on the Life Saving Drugs Program.
This year, the theme for #RareDiseaseDay is ‘Bridging Health and Social Care’. Together, we want to help create greater coordination between medical, social and support services to help those living with a rare disease.
Thanks to Louise Healy, MDDA’s Vice President and Rare Voices Australia Director, for representing us all so well.