Adult on Dialysis Machine
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.

Reference-materials
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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.