CASR Patient Support

CASR Patient Support We provide advocacy services, lobby government and pharmaceutical companies

We're a patient advocacy organization focused on promoting new treatment options for Calcium Sensing Receptor (CaSR) disorders, particularly Hypoparathyroidism.

Did you know high-dose calcium and vitamin D therapy comes with risks beyond strong bones? While these treatments are st...
08/12/2025

Did you know high-dose calcium and vitamin D therapy comes with risks beyond strong bones? While these treatments are standard for CaSR disorders like hypoparathyroidism, studies show long-term use can lead to kidney problems (like kidney stones and decreased kidney function), increased risk of cardiovascular disease, and high calcium in urine (hypercalciuria). These complications may greatly impact your health and wellbeing over time. It's crucial to regularly monitor your serum calcium, kidney function, and heart health: don't just focus on symptoms alone. Want more info on safer, underlying-cause treatments? Visit casr.org.au.

Sources: Zavatta G & Clarke BL, Endocrine Connections, 2020. Gosmanova EO et al., Adv Ther, 2021. NIH PMC6357623.

We're excited to announce that you can now support CaSR Patient Support through our secure online donation portal at cas...
27/11/2025

We're excited to announce that you can now support CaSR Patient Support through our secure online donation portal at casr.org.au. Every donation goes directly towards advancing research, advocacy, and support for those affected by Calcium Sensing Receptor (CaSR) disorders such as Hypoparathyroidism.

Your generosity makes a real difference. All donations are tax deductible, so your contribution has lasting impact and added benefit. Together, we can help drive better treatments and improve the lives of our community. Visit casr.org.au to donate today and be part of positive change.

Only about 5% of rare diseases have an approved treatment: meaning a huge 95% are left without targeted therapies. (Sour...
22/11/2025

Only about 5% of rare diseases have an approved treatment: meaning a huge 95% are left without targeted therapies. (Source: Cacoub et al., Front Public Health, 2025)

Why? Most rare diseases affect too few people to attract research funding, and many are complex or genetic. Delayed diagnosis and lack of awareness make innovation even harder.

Patient advocacy groups like CaSR Patient Support are changing this: by building supportive networks, pushing governments and pharma for research and funding, and connecting patients with medical experts. Every patient voice helps raise awareness and bring new options closer.

Learn more and join us at casr.org.au.

Genetic testing for Calcium-Sensing Receptor (CASR) mutations is increasingly recognized as the diagnostic gold standard...
21/11/2025

Genetic testing for Calcium-Sensing Receptor (CASR) mutations is increasingly recognized as the diagnostic gold standard for certain hypoparathyroidism disorders like ADH1. Recent phase 3 trial findings reveal that up to 76% of patients with CASR mutations treated with the targeted therapy encaleret achieved optimal blood and urine calcium levels, compared to only 4% with traditional care (BridgeBio, 2025). With genetic testing, clinicians can identify the root cause of abnormal calcium handling, enabling access to precision therapies such as calcilytics rather than relying solely on symptom management. Diagnosis by gene mutation ensures patients receive the most advanced care, supporting better long-term outcomes and more tailored treatment strategies.

Source: BridgeBio Reports Positive Phase 3 Topline Results for Encaleret in Patients with Autosomal Dominant Hypocalcemia Type 1. News release. October 29, 2025. https://www.globenewswire.com/news-release/2025/10/29/3176268/0/en/BridgeBio-Reports-Positive-Phase-3-Topline-Results-for-Encaleret-in-Patients-with-Autosomal-Dominant-Hypocalcemia-Type-1.html

Genetic testing for CASR variants is rapidly becoming the new standard for diagnosing hypoparathyroidism. Recent studies...
21/11/2025

Genetic testing for CASR variants is rapidly becoming the new standard for diagnosing hypoparathyroidism. Recent studies show that gain-of-function changes in the CASR gene are the most common genetic cause of non-surgical hypoparathyroidism, found in 18% of patients tested (Mannstadt et al., J Endocr Soc. 2025; PMC12545982). Identifying a CASR variant can provide a clear answer when there’s no history of neck surgery and help guide treatment options, including access to emerging therapies like calcilytics. Following new international guidelines, genetic testing offers patients and families more certainty and practical next steps for their health.

Source: Mannstadt et al., Journal of the Endocrine Society, 2025. https://pmc.ncbi.nlm.nih.gov/articles/PMC12545982/

New European Society of Endocrinology guidelines offer updated recommendations for diagnosing and managing chronic hypop...
18/11/2025

New European Society of Endocrinology guidelines offer updated recommendations for diagnosing and managing chronic hypoparathyroidism. These changes: such as extending the definition of chronic hypoparathyroidism to 12 months post-surgery and introducing new treatment algorithms: could help Australian patients access better care, clearer pathways to advanced treatments, and improved quality of life. If adopted locally, these guidelines could address current gaps in diagnosis and management for hypoparathyroidism. Source: Bollerslev et al., European Journal of Endocrinology 193(5), 2025; https://pubmed.ncbi.nlm.nih.gov/41231236/

Ever felt frustrated repeating your medical story, especially in emergencies? For people living with rare diseases, this...
14/11/2025

Ever felt frustrated repeating your medical story, especially in emergencies? For people living with rare diseases, this is a daily reality. New research shows that "Patient Passports" can help! In a 2025 pilot study published in the European Journal of Human Genetics, 72% of rare disease patients said a passport made communication with new healthcare teams easier, and 54% reported better access to care (Balfour et al., 2025). Healthcare staff also found passports improved care coordination.

Imagine carrying a document that summarizes your diagnosis, treatments, and care preferences: a simple tool making every appointment more patient-focused. At CaSR Patient Support, we believe in empowering patients and improving lives. Would you use a Patient Passport?

Primary source: Balfour J et al. European Journal of Human Genetics. 2025.

Did you know Yorvipath can help protect your kidneys in the long run if you’re living with hypoparathyroidism? Recent cl...
13/11/2025

Did you know Yorvipath can help protect your kidneys in the long run if you’re living with hypoparathyroidism? Recent clinical studies show Yorvipath (palopegteriparatide) not only maintains healthy calcium levels, but also improves and sustains kidney function for at least three years. Patients in the PaTHway trial saw a mean increase in eGFR at 2 years, with those starting with lower kidney function benefitting the most. Unlike traditional therapies, Yorvipath reduces risks for kidney stones and chronic kidney disease – a real win for patient wellbeing!

Want to learn more about new treatments? Visit casr.org.au or join the CaSR Patient Support community today.

Sources: Healio May 2025 (https://www.healio.com/news/endocrinology/20250530/agent-improves-skeletal-dynamics-renal-function-at-2-years-for-hypoparathyroidism) and The Journal of Clinical Endocrinology & Metabolism, April 2025 (https://academic.oup.com/jcem/article/110/4/951/7815470)

Did you know that patient advocacy groups are leading the charge in medical research, especially in rare endocrine disea...
13/11/2025

Did you know that patient advocacy groups are leading the charge in medical research, especially in rare endocrine diseases? By joining forces with researchers and clinicians, organizations like CaSR Patient Support are ensuring patient voices shape discovery and innovation.

For example, a French national rare diseases registry study found that patient-led data helped refine our understanding of lipodystrophy and severe insulin resistance syndromes, influencing treatment guidelines and giving researchers a real-world perspective (Vantyghem et al., Annales d’Endocrinologie, in press, doi:10.1016/j.ando.2025.101730).

When patients drive research, they spark practical solutions and speed up breakthroughs: benefitting families, medical teams, and the whole health community. Learn more about how CaSR Patient Support is putting patient advocacy into action!

Source: Vantyghem MC, Nobécourt E, Vatier C, et al. Annales d’Endocrinologie. In press, 2025. doi:10.1016/j.ando.2025.101730.

Big news for ADH1 patients! In a Phase 3 trial, 76% of encaleret-treated patients hit target calcium levels vs. only 4% ...
13/11/2025

Big news for ADH1 patients! In a Phase 3 trial, 76% of encaleret-treated patients hit target calcium levels vs. only 4% with conventional treatment. Plus, 91% had improved parathyroid hormone levels. These promising stats offer real hope for those affected by CaSR disorders.

Source: BridgeBio Pharma CALIBRATE trial, October 2025. Full details: https://investor.bridgebio.com/news/news-details/2025/BridgeBio-Reports-Positive-Phase-3-Topline-Results-for-Encaleret-in-Patients-with-Autosomal-Dominant-Hypocalcemia-Type-1/default.aspx

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