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...
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...
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....
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: Foods NOT allowed: Meat, fish, eggs, dairy, wheat, rice, nuts, legumes, and even many common vegetables and...
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...
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...
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...
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! Read it here now! Stay connected, stay...
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...
The Metabolic Dietary Disorders Association (MDDA), along with patients and clinicians, are profoundly disappointed by Moderna’s sudden decision to withdraw the Australian clinical trial for Methylmalonic Acidemia (MMA) and are calling for Moderna to urgently...
📢 Community Announcement: NutriciaStore Website Update 📢 We’re sharing an update from Nutricia regarding the NutriciaStore website (www.nutriciastore.com.au). For those in our community who rely on NutriciaStore for low-protein ‘Loprofin’ products, here’s what you...
