For Clinicians
Connect your patients with non‑surgical genetic hypoparathyroidism and ADH1 to peer support, evidence‑based information, and a national patient registry.
A Community for a Rare Diagnosis
CaSR Patient Support is an Australian health promotion charity for people affected by non‑surgical genetic hypoparathyroidism and autosomal dominant hypocalcaemia type 1 (ADH1), conditions caused by gain‑of‑function variants in the calcium‑sensing receptor. For a condition this rare, connecting a newly‑diagnosed patient to others who understand it can be as valuable as the clinical management itself.
Peer Support
A patient and carer community so your patients are not navigating a rare diagnosis alone. Shared experience of daily management, symptoms, and the emotional load of a lifelong condition.
Evidence‑Based Information
Plain‑language explanations of the condition, current management, and the emerging treatment landscape, to support your patients between appointments.
National Patient Registry
A consent‑first registry that helps quantify the Australian patient population, supports advocacy for treatment access, and keeps patients informed about clinical trials and future therapies as they become available.
A Changing Treatment Landscape
After decades of symptom‑directed management with calcium and active vitamin D, calcilytics (negative allosteric modulators of the calcium‑sensing receptor) are in late‑stage development for ADH1. A connected, informed patient population is better placed to access these therapies if and when they reach Australia.
Encaleret (Phase 3)
In the Phase 3 CALIBRATE trial (top‑line results, BridgeBio, October 2025), 76% of participants on encaleret had blood and urine calcium both in target range at Week 24, compared with 4% while on conventional therapy; 91% had PTH above the lower limit of normal, compared with 7%. Phase 2b results were published in the New England Journal of Medicine (Gafni et al., 2023).
Disease Burden
On conventional therapy, a substantial proportion of ADH1 patients develop renal complications including nephrocalcinosis and kidney stones (Roszko et al., JBMR 2022). An ongoing natural history study (CLARIFY, NCT05227287) continues to characterise long‑term burden.
Australian Trial Activity
The Phase 3 CALIBRATE trial lists two Australian sites: Royal North Shore Hospital (St Leonards NSW) and Royal Brisbane and Women’s Hospital (Herston QLD) (ClinicalTrials.gov NCT05680818). Australian patients may be eligible for future trials. Full detail, sources, and the treatment pipeline are on our research page.
Connecting a Patient Takes Two Minutes
There is no formal referral process and no cost. You can point a patient to us directly, or reach out yourself. Referrals are received into one of two free programs: the Hypopara Support Program for hypoparathyroidism in all its forms, and the ADH1 Support Program for autosomal dominant hypocalcaemia type 1.
Direct Your Patient to Join
Share our registry sign‑up. Your patient completes a short, consent‑first form and is connected to the community and kept informed about treatment developments.
Share Patient Resources
Direct patients to our plain‑language resources on understanding the condition, its management, and living well with it.
Get in Touch
Have a clinical question, want to collaborate, or interested in our Medical Advisory Board? Contact us and we will connect you with the right person.
Guided by a Medical Advisory Board
Our patient information and advocacy positions are reviewed by Australian specialists, so what reaches your patients is grounded in current evidence.
Prof Roderick Clifton‑Bligh
Head of the Medical Advisory Board. Professor Clifton‑Bligh leads the board’s review of scientific positions and ensures our advocacy translates the latest evidence into meaningful action for patients.
Evidence‑Based Advocacy
The board reviews clinical and scientific positions, translates complex research into accessible patient communications, and ensures our campaigns and policy submissions are rigorously evidence‑based.
Request Patient Referral Materials
Free information you can give to patients living with hypoparathyroidism, ADH1 and calcium‑sensing receptor disorders. No cost, and no obligation.