Adult on Dialysis Machine

Resources to help you diagnose and manage PH1

Find links to advocacy organizations, information on testing and research resources, and primary hyperoxaluria type 1 (PH1) educational materials below.

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Advocacy and professional organizations

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Oxalosis & Hyperoxaluria Foundation (OHF) - Logo

Oxalosis & Hyperoxaluria Foundation (OHF)

OHF supports clinicians and patients in the hyperoxaluria community through education, advocacy, and grants and funding for research.

Rare Kidney Stone Consortium (RKSC) - Logo

Rare Kidney Stone Consortium (RKSC)

RKSC serves as a resource and information clearinghouse for investigators, clinicians, and patients.

National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) - Logo

National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK)

NIDDK conducts and supports research into kidney conditions.

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Global Genes - Logo

Global Genes

Global Genes provides education and advocacy for rare disease communities.

National Organization for Rare Disorders (NORD) - Logo

National Organization for Rare Disorders (NORD)

NORD provides resources about rare diseases for clinicians and researchers.

American Urological Association (AUA) - Logo

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.

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European Hyperoxaluria Consortium OxalEurope - Logo

European Hyperoxaluria Consortium OxalEurope

OxalEurope serves as a hyperoxaluria-centered consortium providing clinical guidelines for screening, guidance, diagnosis, and treatment for PH1.

R.O.C.K. Society - Logo

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.

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Testing and research information

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One option for genetic testing for PH1

Alnylam Act - Logo - Genetic Testing

Alnylam Pharmaceuticals sponsors third-party genetic testing and counseling for individuals who may carry gene mutations known to be associated with PH1.

PH1 clinical trials

ClinicalTrials.gov - Clinical Trials Government Website - Logo

You can locate ongoing clinical trials at clinicaltrials.gov.

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Downloads and videos

Reference materials

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Videos

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Primary Hyperoxaluria Type 1 (PH1) Mechanism of Disease - Body Figures - Video Thumbnail

When kidney stones may be a sign of something more serious1

Learn about when a systemic condition, which can be confirmed through genetic testing, may be behind kidney stone formation.1

Primary Hyperoxaluria Type 1 (PH1) Mechanism of Disease - Kidney Function Decline - Video Thumbnail

PH1 mechanism of disease

Learn about how genetic mutations in PH1 patients can cause progressive, potentially life-threatening damage.2,3

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Primary Hyperoxaluria Type 1 (PH1) in Children - Family With PH1 - Disease Burden - Video Thumbnail

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.

Primary Hyperoxaluria Type 1 (PH1) in Children - Parents' Caregiving Perspectives - Video Thumbnail

Caregiver perspectives, part 1: Jared Skinner, parent of children with PH1

Listen to Jared Skinner, parent of 3 children with PH1, talk about his role as a caregiver helping them manage the disease.

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Parent Of Child With Primary Hyperoxaluria Type 1 (PH1) - Medical Management Journey - Video Thumbnail

Caregiver perspectives, part 2: Natalie Skinner, parent of children with PH1

Watch Natalie Skinner talk about some of the challenges she faces on a day-to-day basis as she cares for her children.