03/09/2026
🌎💙 PCD Australia at the Global PCD Conference – Montreal, Canada 🇨🇦
There are moments in advocacy that remind you why you started.
For PCD Australia, being part of the Global PCD Conference in Montreal was certainly one of those moments.
We were incredibly proud to have a strong Australian representation at the conference, with 3 Doctors, 2 Researchers, a parent board member and myself, as President of PCD Australia, all coming together to represent different perspectives within our PCD community.
That representation is incredibly important.
PCD is a complex and rare disease, and improving outcomes requires all of us to work together — clinicians, researchers, allied health professionals, patients, parents and patient-led organisations.
It was also a particularly special privilege for me personally to open the second day of the conference, speaking about Global Patient Leaders and the important work they do within their countries and across the international PCD community.
Patient leaders are often the people who are there from the very beginning.
They are contacted when someone is newly diagnosed. They answer questions, provide reassurance, connect families with information and support, advocate for better care, raise awareness, contribute to research and create connections between their communities and the medical and research world.
And very often, they do this work voluntarily and behind the scenes, because they know how much it matters.
Standing in that room and acknowledging the incredible patient leaders who were present was a real privilege.
These leaders represent their communities, their countries and, ultimately, the people and families living with PCD who don't always have a voice in the room.
For PCD Australia, being part of this global conversation is about more than attending a conference.
It is about bringing Australia to the table — and bringing the global PCD community back home with us.
Throughout the conference, we heard about exciting developments in:
🔬 PCD research and clinical trials
🧬 Genetics and improving diagnosis
🫁 Clinical care and airway clearance
💙 Quality of life and the lived experience of PCD
🤝 Patient engagement and advocacy
🌎 International collaboration and the future of PCD care
But perhaps one of the biggest messages we take home from Montreal is this:
No country can do this alone.
We need collaboration.
We need clinicians and researchers working alongside patient organisations.
We need patients and parents involved in the conversations that shape their care and the research that will determine their future.
And we need to share knowledge across borders rather than working in isolation.
PCD may be rare, but our community is global.
I am incredibly proud of the Australian representation in Montreal and grateful to everyone who contributed their knowledge, experience and passion.
To the doctors and researchers who continue to push PCD research and care forward.
To the parents who advocate every day for their children.
To the patients who share their lived experience.
And to the patient leaders around the world who continue to show up, often voluntarily, to make sure their communities are heard.
It was a privilege to acknowledge you. It is a privilege to stand alongside you. And it is a privilege to represent PCD Australia.** 💙
Now we bring what we have learned home.
For our Australian PCD community.
For the global PCD community.
And for the next generation.
Together, we can make a difference. 🇦🇺🌎💙❤️
