Hidradenitis Suppurativa Australia

11/10/2025

Cannot wait for our awesome advocacy workshop!! This will run in October and YOU get to vote on the day!
It will be 12:30 pm – 1:30 pm (NSW TIME) on Thursday, 23 October, or same time Friday, 24 October.
If you want to attend just let me know and I'll get you the zoom link! Excited to see everyone there

Want to be advocate but don’t know where to start? It can be overwhelming, confusing and scary to put yourself out there and not know where to begin.

We’ve got you! Advocacy Toolkit is coming soon to help you find your way to make an impact. Want to join us for a virtual training session? Keep an eye on our socials for the dates in October.

09/10/2025

Cannot wait for our awesome advocacy workshop!! This will run in October and YOU get to vote on the day!
It will be 12:30 pm – 1:30 pm (NSW TIME) on Thursday, 23 October, or same time Friday, 24 October.

If you want to attend just let me know and I'll get you the zoom link! Excited to see everyone there :)

Want to be advocate but don’t know where to start? It can be overwhelming, confusing and scary to put yourself out there and not know where to begin.

We’ve got you! Advocacy Toolkit is coming soon to help you find your way to make an impact. Want to join us for a virtual training session? Keep an eye on our socials for the dates in October.

07/10/2025

EXCITING NEWS IN THE AUSSIE HS SPACE.

The application to have bimekizumab listed on the Pharmaceutical Benefits Scheme (PBS) for moderate to severe HS is one step closer. It has been approved for sale in Australia by the Therapeutic Goods Administration (TGA). That means that it can be prescribed but patients will have to pay full price for it.

It has been recommended for subsidised access via the PBS by the Pharmaceutical Benefits Advisory Committee (PBAC). The next step is for wholesale price negotiations between the Australian Government and the medicine sponsor. This does not guarantee that bimekizumab will be available through the PBS for moderate to severe HS yet but the signs are very positive. Remember any time you get the chance to share your feedback, your lived experience, your HS journey, you should.

Patient Voice Initiative have a really great explanation of the process of getting medications on the PBS in Australia.

https://www.patientvoiceinitiative.org/patient-experience-and-participation/pharmaceutical-benefits-scheme/

07/10/2025

Want to be advocate but don’t know where to start? It can be overwhelming, confusing and scary to put yourself out there and not know where to begin.

We’ve got you! Advocacy Toolkit is coming soon to help you find your way to make an impact. Want to join us for a virtual training session? Keep an eye on our socials for the dates in October.

05/10/2025

Pain is hard to treat, hard to talk about and even harder when you are a child. This is an amazing resource for helping parents navigate challenges that their kids deal with when it comes to pain, school and more. Thanks to the amazing Chronic Pain Australia for this resource.

🌟 New Resource for Parents & Carers 🌟

School can be tough when your child lives with chronic pain. Learning With Pain: A Parent’s Guide to Managing School for Kids in Pain is designed to support you every step of the way.

💡 Inside you’ll find:
✔️ Practical strategies to support learning and wellbeing
✔️ How to advocate for your child at a school level
✔️ Guidance on flexible options like distance or home education
✔️ Tips to nurture social connections

This resource empowers families to work with schools and create an environment where children in pain can thrive.

👉 Download all Kids in Pain resources at: https://chronicpainaustralia.org.au/kids-in-pain/

02/10/2025

Advocacy can feel scary but it's also very exciting

You don’t need to move mountains to be an advocate
✔️ Speaking up at a doctor’s appointment
✔️ Sharing HS facts online
✔️ Supporting someone newly diagnosed
These small things create many ripples that help others jump on board to create BIG WAVES

That’s Advocacy in Action.

01/10/2025

Advocacy isn’t just standing at Parliament House with a megaphone. Small steps count towards the goal.

✔️It’s asking your GP more questions,
✔️It’s requesting a second opinion
✔️It’s sharing reliable HS info with a friend,
✔️It’s sharing your story so others don’t feel alone.

That’s Advocacy in Action.

30/09/2025

Your voice matters and can help raise awareness!!

What’s your HS experience? Do you feel like sharing your words with the HS community? You can remain anonymous or put your first name only to it.
Want to be featured in an awareness video? The choice is yours and we would love to hear from you.

How would you describe your journey, your pain, your symptoms, your flares, how it makes you feel and the impacts it has on your life?

Comment below or send through a message if you wish to stay anonymous and please only share what you are comfortable with. Connect if you want to be part of the awareness video too.

26/09/2025

When it comes to Hidradenitis Suppurativa (HS), misinformation can cause real harm. It leads to delays in diagnosis, confusion about treatment, and added stigma for those HS Warriors already carrying a heavy burden.

Because HS is a complex condition, knowledge is always evolving. What we knew yesterday may change as new research emerges. That’s why it’s so important to follow trusted, reliable sources who stay on top of research.

At HS Australia and our friends at HS Connect, we work hard to ensure the information we share is accurate, up-to-date, and evidence-based.
It’s our responsibility to share only facts and update them when new knowledge becomes available. Together, we can build a stronger, better-informed HS community. 💜

19/09/2025

Amazing news in the HS Space out of EADV this week with positive results from several HS studies and testing of potential treatments!!
The more treatment options the community has, the more choice and freedom we have.

-Three-Year Data Reinforce Long-Term Efficacy and Safety of Bimekizumab in Hidradenitis Suppurativa

-Sanofi announces positive Phase 2a Results for Brivekimig in HS

-Povorcitinib Shows Sustained Efficacy in HS at 24 Weeks and

Check out more info at the link below and feel hope that there is such dedication into HS research and so many amazing opportunities in future.

https://www.dermatologytimes.com/view/povorcitinib-shows-sustained-efficacy-in-hs-at-24-weeks