Aussie’s With HHT

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

08/06/2025

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/

25/04/2024

We need your feedback!

We're a lean and mean team here at Cure HHT, so we want to ensure we're focusing on the things that matter most to YOU! The only way we can do that is with your feedback.

Please complete this brief survey to help us understand your experience with us, and opportunities to better help you navigate this disease: https://ow.ly/nr7Z50RlIW5

25/04/2023

Do chronic nosebleeds impact your life?

We invite you to learn more about the PATH-HHT study. Recruitment for the study has been well underway at 10 Centers of Excellence (CoE) across the US with a few more being added, but we still need additional patients to meet our study benchmarks. This study is vitally important in helping to develop better and more effective treatment options to manage nosebleeds. Learn more about the study and locate information for a recruiting CoE nearest you: https://curehht.org/research/participate-in-research/clinical-trials/

Not by a participating CoE? No problem. Thanks to a generous donor, Cure HHT is able to provide travel reimbursement funds upon application. Send all requests to clinicialresearch@curehht.org to learn how to apply.

21/04/2023

Talk 1-on-1 with the world's HHT experts!

Register today for our upcoming National Conference and rub elbows with the best and brightest in HHT care and research. This is a can't-miss opportunity to get your questions answered: hhtconference.org