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Although PH is a rare disease that affects a small number of people, there are multiple sources for reliable information. The following organizations provide information on PH causes, symptoms, diagnosis, and treatment, as well as resources for caregivers and people with PH.

PH advocacy

Oxalosis and Hyperoxaluria Foundation

Learn about initiatives for people with primary hyperoxaluria, or sign up to join the OHF Patient Registry. You can also learn about clinical trials for PH.

Online resources

American Kidney Fund

The American Kidney Fund provides information about unknown causes of kidney disease, as well as disease education on the symptoms, causes, and management of PH.

Genetic and Rare Disease Information Center

Explore disease education, from causes to treatment, guides for finding a specialist, tips for financial aid, and help with travel costs. Specific guides are available to learn about PH1, PH2, and PH3.


MedlinePlus is a great resource for disease information.

Mayo Clinic

Find disease education, including symptoms, causes, diagnosis, and treatment, on this website or Facebook page.

National Kidney Foundation (NKF)

NKF provides disease education, including symptoms, diagnosis, coping with PH1, and finding support.

National Organization for Rare Disorders (NORD)

NORD is a great resource for disease education, including signs and symptoms, causes, diagnosis, and therapies.


In addition, NORD offers resources for people with rare diseases and their caregivers.


Discover disease education for PH.

Rare Renal

Explore information for rare kidney conditions.

Rare Kidney Stone Consortium

Explore disease information for physicians and people with PH.

Patient registries

There are registries for people with PH in the United States and in Europe. These registries allow you to make an impact by helping to shape research and pave the way for new treatments.

Oxalosis and Hyperoxaluria Foundation

Get more information about the OHF Patient Registry. Some people with PH living outside the United States have signed up for this registry. If your country does not have a PH patient registry, consider registering here.

Rare Kidney Stone Consortium Biobank

This clinical trial will collect biologic samples from patients with PH, cystinuria, APRT deficiency, and Dent disease, and from their family members, for use in future research. This will help to advance the understanding of disease expression and the factors associated with kidney injury in these 4 diseases, with the overall goal of developing new treatments to preserve kidney function and reduce nephrocalcinosis and stone formation.


If you’re interested in joining the clinical trial, learn more by visiting the website.

Caregiver resources

Caregiver Action Network

Find resources and support for rare disease caregivers.

National Organization for Rare Disorders (NORD)

Visit the NORD site to find patient and caregiver assistance.

Explore support and advice regarding siblings of children with chronic illnesses or disabilities.

Mayo Clinic

The Mayo Clinic has great caregiver tips for taking care of yourself.

PH treatment resources

National Kidney Foundation

The National Kidney Foundation has excellent resources on kidney stone removal procedures, including percutaneous nephrolithotomy (PCNL), ureteroscopy (URS), and extracorporeal shock wave lithotripsy (ESWL). Additionally, you can find information about kidney health, important lab tests, kidney transplant, and dialysis.

Cleveland Clinic

The Cleveland Clinic is another good source of information on kidney stone removal procedures, with resources on PCNL and URS.

National Institutes of Health

The National Institutes of Health has developed resources with information about kidney transplant, liver transplant, and dialysis.

American Kidney Fund

The American Kidney Fund has lots of information about the kidneys, particularly for those wanting to learn more about kidney transplant and dialysis.

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    What parents can do

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