Deferral of Palynziq (pegvaliase) by the PBAC
The Metabolic Dietary Disorders Association acknowledges the decision by the Pharmaceutical Benefits Advisory Committee (PBAC) to defer the listing of Palynziq (pegvaliase) on the Pharmaceutical Benefits Scheme (PBS) for Australians living with phenylketonuria (PKU). Information regarding the PBAC outcome and a brief summary can be found here. We know this outcome will be disappointing for…
Have Your Say: PBAC Consumer Comments on Pegvaliase (Palynziq) Are Open!
Pegvaliase (Palynziq) Consumer Comments – Close 21 January 2026 The Pharmaceutical Benefits Advisory Committee will consider pegvaliase (Palynziq) for the second time in March 2026 for the following proposed populations: Resubmission to request listing of pegvaliase for the treatment of patients aged 16 years and older with PKU who have inadequate blood phenylalanine control (baseline blood phenylalanine level above…
What Is Newborn Bloodspot Screening?
What Is Newborn Bloodspot Screening? Every baby born in Australia (around 99%) receives a heel‑prick test within 48–72 hours of birth. A few drops of blood are collected and tested for serious, rare inherited conditions — often before any signs or symptoms appear. 🌍 By the Numbers: Real Impact 🧬 A Legacy of Lifesaving Since the 1960s…
Life on the IEM Low-Protein Diet
Life on the IEM Low-Protein Diet 🥕 What is a Low‑Protein Diet? People with IEM must limit protein intake to an extremely low level every day. This means: 🍕 What Do These Restrictions Mean? Most patients cannot eat pizza, birthday cake, regular bread, yogurt, ice cream, chocolate, hot dogs, hamburgers, or turkey at celebrations. Even common fruit and vegetables…
What is PKU? Understanding a Rare and Life‑Changing Condition
Phenylketonuria (PKU) is a rare inherited disorder caused by a deficiency of the enzyme phenylalanine hydroxylase (PAH). This means people with PKU cannot properly break down phenylalanine (Phe) — an amino acid found in most foods — causing it to build up to toxic levels in the brain if left untreated. How Common is PKU?…
Support a Lifetime of Impact – Awareness Week Donation Drive
Dr. Robert Guthrie: The Man Behind Newborn Screening 👶 🩺 A Life That Changed Millions of Others Born 28 June 1916, Dr. Robert Guthrie was an American microbiologist and physician who revolutionised newborn screening — a legacy that has saved millions of lives across the globe. 💧 The Dried Bloodspot Test – STILL USED TODAY In the early 1960s,…
Research Opportunity
MDDA is pleased to share this important research opportunity for parents and caregivers to help shape the future of dietetic care for children. Are you a parent or caregiver whose child has received care from a dietitian? We’d love to hear your thoughts! We’re exploring the knowledge, skills, and qualities dietitians need to provide safe…
MDDA Matters February eNews 2025
The February edition of our e-news is here! This month, we’re recognising Rare Disease Day, celebrating a huge advocacy win for low-protein milk on the PBS, and looking ahead to an exciting 2025—including Retreat planning! Stay connected, stay involved—because together, we are stronger! If you didn’t receive the latest eNews please email [email protected] to be…
Low-Protein Milk to Remain on the PBS: A Win for Our Community
Advocacy isn’t easy, but for MDDA, it’s essential. The availability of low-protein milk substitutes under the PBS has been uncertain, creating unnecessary stress for individuals and families managing a low protein diet due to Inborn Errors of Metabolism (IEMs). MDDA has been at the forefront, working closely with suppliers and the Australian Government to push…
Newsletter Archives
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