ADH1 Support Program
Free, Australia‑wide support for people and families affected by autosomal dominant hypocalcaemia type 1 (ADH1), the inherited calcium‑sensing receptor condition at the centre of why CaSR Patient Support exists.
What ADH1 Is, in Plain Language
The calcium‑sensing receptor works like a thermostat for the calcium in your blood. In ADH1, an inherited change makes that thermostat too sensitive, so the body behaves as though calcium is high when it is not, and blood calcium is pushed down. Because ADH1 is autosomal dominant, it runs in families and can affect several relatives across generations.
ADH1 is a genetic, non‑surgical form of hypoparathyroidism. It is rare enough that many people have never heard the name before their own diagnosis, and rare enough that some clinicians have limited experience with it. That is precisely the gap this program exists to fill. Our explanation of the calcium‑sensing receptor goes into more detail, and our research page covers the current treatment pipeline with full sources.
Four Things, All Free
The ADH1 Support Program is administered by CaSR Patient Support, an ACNC‑registered Australian health promotion charity. There is no fee and no requirement to have a confirmed genetic test result to take part.
Peer Support for ADH1 Families
Because ADH1 is inherited, it is rarely one person’s diagnosis. Connect with other Australian families navigating the same condition across generations, including parents of newly diagnosed children.
National Patient Registry
A consent‑first registry recording how many Australians are affected by ADH1 and related calcium‑sensing receptor disorders. For a condition this rare, being counted is the precondition for being considered.
ADH1‑Specific Information
Plain‑language information written for ADH1 rather than generic hypoparathyroidism, reviewed by our Medical Advisory Board, so that what you read between appointments is accurate and relevant to your own diagnosis.
Treatment Access Advocacy
ADH1 is the condition targeted by the calcilytics now in late‑stage development. The program exists in part to make sure Australians are not the last to get access once those treatments are approved elsewhere.
Joining Takes About Two Minutes
One short, consent‑first form. You choose what you share, and you can share nothing about your health at all and still join.
Patients and Families
Join the national community and registry in one step. Free, with the option to withdraw at any time.
Endocrinologists and Geneticists
No formal referral process, no cost to the patient. Refer directly, or contact us about the Medical Advisory Board and research collaboration.
Wider Hypoparathyroidism Support
ADH1 sits within hypoparathyroidism more broadly. Our Hypopara Support Program covers the condition in all its forms.
A note on medical advice
This program provides peer support, information and advocacy. It does not provide medical advice, diagnosis, genetic testing or treatment. Management of ADH1 must be tailored by your specialist, and you should never change medication without speaking to your clinician.
About This Program
Program name: ADH1 Support Program
Administered by: CaSR Patient Support, ABN 11 855 673 895, an ACNC‑registered Australian health promotion charity, endorsed as a deductible gift recipient.
Scope: autosomal dominant hypocalcaemia type 1 (ADH1) and related calcium‑sensing receptor disorders, for patients, carers and affected families.
Delivered: Australia‑wide, online, free of charge.
Clinical governance: patient information and advocacy positions are reviewed by CaSR’s Medical Advisory Board, headed by Prof Roderick Clifton‑Bligh.
Program name adopted: 10 August 2026. CaSR Patient Support has been an ACNC‑registered health promotion charity for these conditions since 18 January 2022; this page names the support services it provides.
Page last reviewed: 11 August 2026.
Contact: enquiries@casr.org.au or 1800 431 231.