Porphyria Association Inc. - Australia

29/05/2026

A big step forward for Australians living with porphyria — Givosiran (Givlaari) is now available on the PBS. 💜

During Global Porphyria Week, this photo captures a patient receiving their first dose, marking a moment of hope for many people living with porphyria.

A/Prof Gayle Ross said: “This is the first treatment to keep the porphyrin levels down through specific targeting of the ALA synthase enzyme. It has proved to be very effective and
have a good safety profile. We are thrilled that our patients will be able to access this life-changing treatment.”

If you think you may be eligible, reach out to your porphyria specialist to discuss whether Givosiran could be an option for you.

Thank you to everyone involved in the advocacy and work that helped make PBS access possible for patients across Australia.

18/05/2026

25/12/2025

🎄✨ Merry Christmas from the Porphyria Association Australia ✨🎄

As we wrap up the year, we want to say a heartfelt thank you to our members, families, supporters, and volunteers for your ongoing support, kindness, and strength throughout the year.

Wishing you and your loved ones a safe, peaceful, and joyful Christmas. We look forward to continuing our work together in the year ahead 💜