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
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
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
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
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
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
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
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
Moderna Abandons Australian Rare Disease Community by Withdrawing from Clinical Trial Melbourne, Australia – 17 February 2025 –
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
Newsletter Archives
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