Primary ciliary dyskinesia (PCD), also known as immotile ciliary syndrome or Kartagener Syndrome , is a rare, ciliopathic, autosomal recessive genetic disease.
Thank you to Stephanie March & Joel Taggart for the fantastic article, and to Greater SA for spotlighting rare disease in SA.
~8% of Aussies live with a rare disease. We’ve reached out to all SA councils — metro/regional — to stand with our community.
🔗 https://t.co/w6zaxjDAX6
🌍 The Living with PCD study is now open for new participants! Register in German or English and share your experiences in our Social Functioning Questionnaire, open until Feb 2026. Join now 👇 https://t.co/aNVjGBhie5
🌺 Lest We Forget.
Today, we honour the courage, sacrifice, and service of those who have defended our freedom.
Their strength and unity continue to inspire hope in every generation.
#RemembranceDay#LestWeForget#PCDAustralia#11November
🫁 Primary Ciliary Dyskinesia (PCD) is a rare genetic disorder where tiny hair-like structures in the airways (cilia) don’t work properly, causing mucus build-up and chronic lung infections.
Raising awareness helps drive early diagnosis + support 💙
#PCDAwareness#RareDisease
Today on #WorldBronchiectasisDay, PCD Australia stands with the global community to raise awareness of bronchiectasis—especially for those living with #PCD. Early diagnosis and better care matter. Let’s drive change, together. 💛🌏 #LungHealth#Bronchiectasis2025
People with PCD face serious risks from RSV—but are being left out of prevention plans. Hospitalisation, lung damage, even death are real outcomes.
📢 Write to your federal rep:
We need access, equity & not be overlooked.
#PCD#RSVProtection#LungHealth#RareDisease#PCDAustralia
📣 PCD Australia is heading to the 2025 World Bronchiectasis Conference in Brisbane!
Come visit our stand, connect with the community, and learn more about PCD and bronchiectasis.
Interested in volunteering? Email: [email protected]
👉 https://t.co/1oMgi9V43Z #WBC2025
🧬 "Nobody ever spoke to me about PCD & fertility…”
A new study reveals the fertility concerns & lived experiences of people with PCD & their families.
🔹 Gaps in care
🔹 Emotional toll
🔹 Inherited risk
📄 Read more: https://t.co/4mkqcm7leq
#PCD#Fertility#RareDisease
This #VolunteerWeek, we’re sending a huge THANK YOU to all the amazing volunteers who’ve supported PCD over the years — from fundraising to serving on the board. Your passion and dedication make everything we do possible. We’re so grateful! 💙👏
Happy #MothersDay to the incredible moms raising children with #PrimaryCiliaryDyskinesia 💜
Your strength, love & tireless care don’t go unnoticed. From daily treatments to endless advocacy—you are heroes. Thank you for everything you do. 💪🌸 #PCD#RareMoms
🇦🇺 Lest We Forget 🇳🇿
Today we honour the courage, sacrifice, and spirit of those who served at Gallipoli and beyond.
At PC Australia, we reflect with gratitude on their legacy and the freedoms we hold dear.
#ANZACDay#LestWeForget#PCAustralia#ANZACSpirit
On this Good Friday, we reflect on sacrifice, hope, and compassion. At PCD Australia, these values guide all we do. Wishing you peace and a moment of reflection today. 🕊️ #GoodFriday#PCDAustralia
During PCD Awareness Month, we're highlighting the complex journey to a PCD diagnosis. Many remain undiagnosed due to low awareness. Here's a map of what it can look like. Contact us for info and support!
#PCD#ChronicIllness#InvisibleIllness#DiagnosisJourney"
The PCD patient conference 2024 will take place online on Friday, November 29, 2024 from 2:00 to 6:00 pm (CET). Registration and information available on our website: https://t.co/jDqSRTubrL
Join us in raising global awareness for Primary Ciliary Dyskinesia (PCD)! Check out the new film by ADCP with real patient stories. PCD affects the cilia, causing respiratory issues and sometimes organ inversion (situs inversus).
Watch here: https://t.co/9Z5F157u5g
Handwashing is vital for those with Primary Ciliary Dyskinesia (PCD) to reduce the risk of respiratory infections. Since clearing mucus is harder with PCD, regular handwashing helps keep germs away. Stay safe, stay clean! 🧼🤲 #PCDAwareness#Handwashing#PCDLife#StayHealthy"
Cilia are tiny hair-like structures that help move reproductive cells. In people with PCD, the cilia don't work properly, making it harder for sperm and eggs to move, which can cause fertility issues. #PCD#Awareness
🎉 We're excited to share our first video on the importance of airway clearance for PCD! It's a helpful guide for parents and patients to manage respiratory health.
Watch now! 👇
https://t.co/kYaulnYEI9
💨 #PCD#AirwayClearance#RespiratoryHealth#PatientEducation