Media
📣 A reminder that consumer comments on sepiapterin (Sephience®) close next Wednesday, 16 September 2026.
If you’re living with PKU, or you’re a parent, family member or carer, we would really encourage you to have your say.
You don’t need to use technical or medical language. PBAC wants to understand your personal experience of PKU, what managing it involves, the challenges you face and what access to another treatment option could mean for you or your family.
Your experience and personal stories are incredibly important and can help demonstrate the broader impact of PKU and why access to a range of treatment and management options matters.
To submit a comment, visit:
https://ohta-consultations.health.gov.au/pbac/
Select Sepiapterin (Sephience®) from the drop-down menu at Question 7.
⏰ Comments close Wednesday, 16 September 2026.
If you’re living with PKU, or you’re a parent, family member or carer, we would really encourage you to have your say.
You don’t need to use technical or medical language. PBAC wants to understand your personal experience of PKU, what managing it involves, the challenges you face and what access to another treatment option could mean for you or your family.
Your experience and personal stories are incredibly important and can help demonstrate the broader impact of PKU and why access to a range of treatment and management options matters.
To submit a comment, visit:
https://ohta-consultations.health.gov.au/pbac/
Select Sepiapterin (Sephience®) from the drop-down menu at Question 7.
⏰ Comments close Wednesday, 16 September 2026.
PBAC - Office of Health Technology - Citizen Space
Find and participate in consultations run by the Office of Health Technology
💙 NSW MDDA COMMUNITY EVENT! 💙
Calling our NSW IEpM community! 📣
Join us for a fun and relaxed day to connect with other IEpM families from across NSW.
Whether you’re an IEpM patient, parent, carer or family member, come along to meet others in the community, catch up with familiar faces and enjoy the day together. 💙
📅 Saturday 31 October
⏰ 10:00am – 1:00pm
📍 Coogee East Ward Senior Citizens Centre
97R Brook St, Coogee NSW 2034
Metered street parking available within walking distance.
✨ What’s happening on the day?
🍴 Fun activities & free raffle
🥛 Formula, supplement & Low Pro product tastings from Nutricia, Vitaflo and Cortex Health
🧑⚕️ Dietitian from the NSW Children’s and Adults Clinics in attendance
💬 Community connection & support
🛍️ Product tastings & information
👉 RSVP is essential – please register via the link in the comments below.
We’re hoping to bring more of these community events to IEpM families in every state across Australia in 2027, so keep an eye out for an event coming near you! 🥰🇦🇺
We’d love to see you there! 💙
Calling our NSW IEpM community! 📣
Join us for a fun and relaxed day to connect with other IEpM families from across NSW.
Whether you’re an IEpM patient, parent, carer or family member, come along to meet others in the community, catch up with familiar faces and enjoy the day together. 💙
📅 Saturday 31 October
⏰ 10:00am – 1:00pm
📍 Coogee East Ward Senior Citizens Centre
97R Brook St, Coogee NSW 2034
Metered street parking available within walking distance.
✨ What’s happening on the day?
🍴 Fun activities & free raffle
🥛 Formula, supplement & Low Pro product tastings from Nutricia, Vitaflo and Cortex Health
🧑⚕️ Dietitian from the NSW Children’s and Adults Clinics in attendance
💬 Community connection & support
🛍️ Product tastings & information
👉 RSVP is essential – please register via the link in the comments below.
We’re hoping to bring more of these community events to IEpM families in every state across Australia in 2027, so keep an eye out for an event coming near you! 🥰🇦🇺
We’d love to see you there! 💙
📣 BREAKING NEWS: An important step forward for the Australian PKU community! Pegvaliase receives positive PBAC recommendation.
21 August 2026
MDDA is delighted that the Pharmaceutical Benefits Advisory Committee (PBAC) has recommended Palynziq® (pegvaliase) for listing on the Pharmaceutical Benefits Scheme (PBS) for eligible people aged 16 years and over living with phenylketonuria (PKU).
This is a significant and very welcome outcome for our community. With this listing Australia becomes only the 4th country to provide subsidised access to this treatment and, thanks to the advocacy of our community, with one of the broadest restrictions.
The PBAC acknowledged the high clinical need within this small patient population, as well as the important contributions made by individuals, organisations and health professionals in response to the March 2026 submission.
MDDA, together with our PKU community, has advocated for access to Palynziq for several years. This recommendation reflects the determination of everyone who has shared their story, contacted decision-makers, raised public awareness and helped others understand the daily challenges of living with PKU.
To every person and family who contributed: thank you. Advocacy can sometimes feel like a long and thankless process, but your voice matters—and your collective efforts have helped us reach this important milestone.
While this is wonderful news, there are still several steps to be completed before Palynziq becomes available through the PBS and metabolic clinics. MDDA will continue to follow the process closely and share updates as further information becomes available.
Read the PBAC outcome and summary here:
21 August 2026
MDDA is delighted that the Pharmaceutical Benefits Advisory Committee (PBAC) has recommended Palynziq® (pegvaliase) for listing on the Pharmaceutical Benefits Scheme (PBS) for eligible people aged 16 years and over living with phenylketonuria (PKU).
This is a significant and very welcome outcome for our community. With this listing Australia becomes only the 4th country to provide subsidised access to this treatment and, thanks to the advocacy of our community, with one of the broadest restrictions.
The PBAC acknowledged the high clinical need within this small patient population, as well as the important contributions made by individuals, organisations and health professionals in response to the March 2026 submission.
MDDA, together with our PKU community, has advocated for access to Palynziq for several years. This recommendation reflects the determination of everyone who has shared their story, contacted decision-makers, raised public awareness and helped others understand the daily challenges of living with PKU.
To every person and family who contributed: thank you. Advocacy can sometimes feel like a long and thankless process, but your voice matters—and your collective efforts have helped us reach this important milestone.
While this is wonderful news, there are still several steps to be completed before Palynziq becomes available through the PBS and metabolic clinics. MDDA will continue to follow the process closely and share updates as further information becomes available.
Read the PBAC outcome and summary here:
Living with Phenylketonuria (PKU) as an adult means carrying a hidden mental load every single day. 🧠 From restaurant math to managing lifelong medical formulas, the effort is constant—but so is the resilience of our community.Swipe through to see the reality of adult PKU in Australia, how we defy the limits, and how MDDA has been supporting this journey through 60 years of newborn screening milestones. 🇦🇺💙 Head to the link in our bio to explore our adult peer networks, access lifestyle resources, or support our ongoing advocacy work! #AdultsWithPKU #PKUAwareness #MDDA #RareDiseaseAustralia #LowProteinLife #NewbornScreening #DietForLife
What does PKU really look like?
For most babies, it starts and ends with a heel prick test.
For our families, that’s where it all begins.
Not just a “special diet.”
It’s weighing every meal.
Tracking every gram of protein.
Taking medical formula every single day.
Regular blood monitoring.
Planning meals, holidays, school events and social occasions around treatment.
For people living with PKU and other low protein metabolic disorders, this isn’t a lifestyle choice.
It’s lifelong medical management.
As we celebrate 60 years of newborn screening, we’re sharing the realities many families navigate every day—often unseen by the wider community.
💙 If this taught you something new, please share it.
The more people understand PKU, the more support, awareness and inclusion our community can build.
#PKU #LowProteinDisorders #NewbornScreening60 #RareDiseaseAwareness #PKUAustralia #MDDA #MetabolicDisorders #ShareForAwareness
mdda.org.au
For most babies, it starts and ends with a heel prick test.
For our families, that’s where it all begins.
Not just a “special diet.”
It’s weighing every meal.
Tracking every gram of protein.
Taking medical formula every single day.
Regular blood monitoring.
Planning meals, holidays, school events and social occasions around treatment.
For people living with PKU and other low protein metabolic disorders, this isn’t a lifestyle choice.
It’s lifelong medical management.
As we celebrate 60 years of newborn screening, we’re sharing the realities many families navigate every day—often unseen by the wider community.
💙 If this taught you something new, please share it.
The more people understand PKU, the more support, awareness and inclusion our community can build.
#PKU #LowProteinDisorders #NewbornScreening60 #RareDiseaseAwareness #PKUAustralia #MDDA #MetabolicDisorders #ShareForAwareness
mdda.org.au
Australia’s PKU Pioneer: Debbie Colyer OAM
Celebrating 60 years of newborn screening through sharing the stories of those who lived it, shaped it, and continue to advocate future generations.
#60yearsofnewbornscreening #pkuawareness #IEPM #pku
Celebrating 60 years of newborn screening through sharing the stories of those who lived it, shaped it, and continue to advocate future generations.
#60yearsofnewbornscreening #pkuawareness #IEPM #pku
