Aussie’s With HHT

26/01/2026

25/01/2026

We have some hot weather happening here in Echuca for the next week, hot dry air is not good for my nose, wish me some luck.

24/01/2026

A short annual survey to help Cure HHT understand community needs, improve care and education, and strengthen support for patients and families.

13/01/2026

🇦🇺✨ BIG NEWS FROM LITTLE RED! ✨🇦🇺

Little Red is bursting with excitement and couldn’t wait to share this amazing awareness moment with our HHT family around the world ❤️

If you remember back in November, our board member Sharnie bravely shared her personal HHT story in a popular national Chat Magazine ,and now her story has travelled even further…👏👏

📢 That’s Life Magazine in Australia has picked up Sharnie’s story and will be publishing it on January 26th!

This is HUGE.
These magazines sit on coffee tables, in waiting rooms, hair salons, hospitals ,everywhere. The reach is massive, and the impact could change lives.

For our Australian HHT family, this is such an important moment. Awareness saves lives ,and this awareness is coming all the way from Northern Ireland to Australia 🌍❤️

Little Red is so proud of Sharnie for speaking up, sharing her journey, and helping shine a light on HHT on a global stage.

🇦🇺 Ozzie HHT’ers ,Please share this post and when you see it, please share it far and wide!
Let’s get this issue into every home, every clinic, every conversation.

Together we are louder.
Together we are stronger.
Together we are changing lives.
👇 Drop a 🇦🇺 if you’re cheering this on
🔁 Share this post to spread the word

Aussie’s With HHT

13/01/2026

We’re excited to announce that our community feedback survey is now live! Your voice matters, and we want to hear from you. Please take a few moments to share your thoughts and help us improve our community. Your feedback is invaluable!

Take the survey: https://loom.ly/_8eR-1A

28/11/2025

https://youtu.be/fan0YHTng6A

This short animated explainer video uses motion graphics to explain Hereditary Haemorrhagic Telangiectasia (HHT) — a rare genetic disorder that affects blood...

28/09/2025

😢❤️ Hey friends, it’s me… Little Red. Can I be honest?
Sometimes I just feel extra emotional ,sad, teary, or even a bit snappy ,and it’s not just because life with HHT can be tough. A lot of the time it’s down to my iron levels or haemoglobin being low. 🩸

Here’s why it happens ⬇️
🧠 Iron is super important for the brain ,it helps make “feel-good” chemicals like serotonin and dopamine. If my iron is low, my mood can dip too.
💨 Low haemoglobin means less oxygen in my blood ,which leaves me tired, foggy, and drained.
😔 And when you’re exhausted all the time, even little stresses can feel overwhelming.
If you’ve noticed yourself feeling more emotional or sad than usual, it might not “just be in your head.” It could be your iron or haemoglobin levels trying to tell you something.

👉 Keep a check on these signs ,it might be time to ask for some blood tests.

📢 Please share this post ,it could help someone recognise what’s going on with them too. And remember to check out our website for more information and support.👇
www.hhtireland.org

19/06/2025

BREAKTHROUGH: A treatment that targets the underlying cause of HHT—not just the symptoms—could be on the horizon.

This week, our close partners at Diagonal Therapeutics presented powerful new preclinical data showing that their antibody-based therapy can restore healthy blood vessel function and reverse key features of HHT in lab models.

Highlights from the findings:

• Restored ALK1-mediated signaling pathways
• Prevented and reversed arteriovenous malformations (AVMs)
• Improved survival and prevention of anemia in translational HHT models

🧬 Plus: The FDA just granted it Orphan Drug Designation, a special status that helps speed up the development of treatment for rare diseases

Why this matters:

DIAG723 – the first potential disease-modifying treatment for HHT -- is expected to enter clinical trials in 2026 and it is now backed by ODD incentives that can accelerate development.

We’re proud to help drive this progress forward—and even more proud to share it with our community.

Continue to support key patient initiatives and breakthroughs such as this by donating to Cure HHT today. Throughout the month of June your impact is doubled as the first $100,000 is match: curehht.org/donate

17/04/2025

Join us as Dr. Jeb Justice, co-director of the HHT Center of Excellence at University of Florida, goes over a variety of ways you can help manage your HHT-re...

31/12/2024

Happy new year everyone, I lasted 51 minutes into 2025 before I had a blood nose. Hope you all had an amazing night celebrating 🥳

23/05/2024

When's the last time you checked out all the resources available on our HHT International Clinical Guidelines page?

We've curated a trove of invaluable resources just for you -- from care checklists, factsheets, recommendations from the world's experts, webinars and more.

Ensure you're up to date on the latest and best practices in HHT care, and make this page your go-to destination for staying informed and empowered on your HHT journey. 💪🔬

Arm yourself with knowledge 💻📚 https://curehht.org/understanding-hht/diagnosis-treatment/hhtguidelines/