ADDITIONAL RESOURCES ON PH1
Find links to advocacy organizations, information on testing and research resources, and primary hyperoxaluria type 1 (PH1) educational materials below.
TESTING AND DISEASE INFORMATION
One option for genetic testing for PH1
Alnylam Pharmaceuticals sponsors third-party genetic testing and counseling for individuals who may carry gene mutations known to be associated with PH1.
Downloads and videos
Videos
When kidney stones may be a sign of something more serious1
Learn about when a systemic condition may be behind kidney stone formation and how genetic testing can help confirm a diagnosis.1
PH1 mechanism of disease
Learn how genetic mutation leads to PH1 and its complications2,3
Patient perspectives: The Skinner family describes life with PH1
Three children in the Skinner family were diagnosed with PH1. Watch parents Natalie and Jared discuss their PH1 journey.
Reference materials
ADVOCACY AND PROFESSIONAL ORGANIZATIONS
Oxalosis & Hyperoxaluria Foundation (OHF)
OHF supports clinicians and patients in the hyperoxaluria community through education, advocacy, and grants and funding for research.
American Kidney Fund
AKF fights kidney disease on all fronts with programs of prevention, screening and early detection, financial support, disease management, clinical research, innovation and advocacy.
European Hyperoxaluria Consortium OxalEurope
OxalEurope serves as a hyperoxaluria-centered consortium providing clinical guidelines for screening, guidance, diagnosis, and treatment for PH1.
National Kidney Foundation
National Kidney Foundation is a lifeline for all people affected by kidney disease. As pioneers of scientific research and innovation, NKF focuses on the whole patient through the lens of kidney health.
Rare Kidney Stone Consortium (RKSC)
RKSC serves as a resource and information clearinghouse for investigators, clinicians, and patients.
American Urological Association (AUA)
AUA promotes high standards of urological care with their clinical guidelines around the management of kidney stones and their associated conditions.
The R.O.C.K. Society
The R.O.C.K. Society is a special interest group dedicated to investigating and understanding the basic mechanisms of stone formation.
National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK)
NIDDK conducts and supports research into kidney conditions.
Global Genes
Global Genes provides education and advocacy for rare disease communities.
National Organization for Rare Disorders (NORD)
NORD provides resources about rare diseases for clinicians and researchers.