MDDA’s Patient Pathways Program is an outreach support system that provides support, mentoring, educational programs and resources for individuals and families living with an IEM throughout every step of their journey. The Pathways Program includes different...
This year has been like no other for the MDDA. COVID-19 has put an enormous strain on our resources following the devastating drought, fires and floods. Like other Australian health charities supporting patients with chronic, complex care needs, we have seen an impact...
Yesterday, June 28th, was International PKU Day! We hope you spent some time celebrating all the great aspects of PKU that make you, YOU! Did you know? : Robert Guthrie, the inventor of the newborn screening test, was born June 28th, 1916 Horst Bickel, the first to...
MDDA would like to congratulate HemoShear Therapeutics who have received approval to go into phase 2 of their clinical trial for the treatment of patients with methylmalonic acidemia (MMA) and propionic acidemia (PA). This is very exciting news and we would like to...
For the past 8 years MDDA has been proactively seeking subsidised access to new therapies for all PKU patients including adults. We advocated strongly for this during the last PBAC submission for BH4 by insisting adults be included in the submission and then ensuring...
