Tools and Resources

Resources

Professional Resources

The following resources can help clinicians and patients find more information on primary hyperoxaluria.

GARD: Genetic and Rare Diseases Information Center
Disease Education

Symptoms, causes, inheritance, diagnosis, treatment, prognosis

Visit GARD: PH type 1, type 2, type 3

Genetics Home Reference

Disease Education
Causes, inheritance pattern

Visit Genetics Home Reference

Mayo Clinic
Disease Education

Symptoms, causes, complications, diagnosis, treatment

Visit Mayo Clinic

NORD: National Organization for Rare Disorders
Disease Education

Signs and symptoms, causes, diagnosis, therapies

Visit NORD

Orphanet
Disease Education
  • Epidemiology, diagnostic methods, genetic counseling, management
  • Review articles and healthcare resources

Visit Orphanet

OxalEurope
Disease Education

Guidelines, studies, publications,
PH Registry

Visit OxalEurope

Oxalosis & Hyperoxaluria Foundation
Disease Education
  • General understanding of hyperoxaluria
  • Drug development pipeline for new therapies

Sign up for Patient Registry
OHF Facebook Page for Patient Support Group
Visit OHF

Rare Kidney Stone Consortium
Disease Education

For patients and physicians

Visit RKSC

Rare Renal
Patient Information

Etiology of PH and its effect on people

Visit Rare Renal

R.O.C.K. Society
Special Interest Society

Basic mechanisms involved in human urinary stone formation

Visit R.O.C.K. Society

Registries

PH Registries

Registries exist for patients with primary hyperoxaluria, both in the United States and in Europe. For more information, see below:

Mayo Clinic*

hyperoxaluriacenter@mayo.edu
454 patients enrolled

OxalEurope

Visit OxalEurope.org
667 patients enrolled

*The Mayo Clinic Hyperoxaluria Center is supported by the Rare Diseases Clinical Research Network of the National Institutes of Health and by the Oxalosis & Hyperoxaluria Foundation.1

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