Campaigns & Advocacy
Together, we can accelerate access to life‑changing calcilytic treatments.
Active Campaigns
Our campaigns focus on accelerating Australian access to calcilytic treatments for non‑surgical genetic hypoparathyroidism and ADH1.
Encaleret Access Campaign
Advocating for timely TGA evaluation and PBS listing of encaleret in Australia. Phase 3 CALIBRATE results were positive (October 2025) and BridgeBio plans NDA submission in H1 2026. We are working to ensure Australian patients are not left behind.
View ResearchPBS Listing Initiative
Campaigning for Pharmaceutical Benefits Scheme inclusion of calcilytic therapies. Without PBS listing, treatments remain unaffordable for most Australian patients. We are building the evidence base and stakeholder support needed for a successful PBAC submission.
Get InvolvedTake Action
Every action strengthens our collective voice. Here’s how you can make a difference today.
Write to Your MP
Contact your federal Member of Parliament and ask them to support timely access to calcilytic therapies for rare disease patients in Australia.
Find Your MPShare on Social Media
Raise awareness by sharing our campaigns with your network. Use #Hypoparathyroidism and #RareDisease to connect with the global patient community. Tag us on June 1 for #WorldHypoparaDay.
Spread the WordSign the Petition
Add your name to our petition calling for government action on rare disease treatment access. Every signature strengthens our submission to policymakers.
Coming SoonHow Advocacy Works
Effective advocacy follows a clear path from awareness to policy change.
Learn
Understand the science, the regulatory pathway, and the needs of the patient community.
Connect
Join with other patients, families, clinicians, and advocacy organisations to build a united voice.
Advocate
Engage policymakers, write submissions, contact your MP, and raise public awareness.
Change
Achieve policy outcomes — TGA registration, PBS listing, and affordable patient access.
The Case for Action
Up to 1,000
Australians estimated to have ADH1, based on a prevalence of ~3.9 per 100,000 (Gorvin et al., Am J Hum Genet 2020). Many carriers remain undiagnosed.
75%
of ADH1 patients on conventional therapy develop complications including nephrocalcinosis and renal impairment (Roszko et al., JBMR 2022; n=57).
