Find links to advocacy organisations, information on testing and research resources, and primary hyperoxaluria type 1 (PH1) educational materials below.
Alnylam Pharmaceuticals sponsors third-party genetic testing and counselling for individuals who may carry gene mutations known to be associated with PH1.
Learn how genetic mutation leads to PH1 and its complications.1,2
Watch Dr Moochhala explain how consanguinity can increase the risk of PH1 — and why it matters when assessing patients with unexplained kidney stones.
Ziggy’s mother shares her family’s brave and challenging journey with PH1 — from the shock of her infant son’s diagnosis, to the life-changing moment when her husband first donated his liver, and then his kidney, to save their child.
OHF supports clinicians and patients in the hyperoxaluria community through education, advocacy, and grants and funding for research.
OxalEurope serves as a hyperoxaluria-centered consortium providing clinical guidelines for screening, guidance, diagnosis, and treatment for PH1.
See how genetic testing plays an important role in a PH1 diagnosis.1,3
References: 1. Milliner DS, Harris PC, Sas DJ, et al. Primary hyperoxaluria type 1. GeneReviews® [Internet]. Updated 15 August 2024. Accessed January 2026. https://www.ncbi.nlm.nih.gov/books/NBK1283/ 2. Cochat P, Rumsby G. N Engl J Med. 2013;369(7):649–658. 3. Cochat P, Hulton SA, Acquaviva C, et al. Nephrol Dial Transplant. 2012;27(5):1729–1736.
PH1-INTR-00032 | January 2026
