Primary Hyperoxaluria Type 1 (PH1)

PH1 is a rare kidney disease that can have a have major impact on a person’s health throughout their life.

ph1_hero_mobile_v1.jpg

Overview

PH1 is an inherited disease that causes the body to make too much of a substance called oxalate. Oxalate then binds with calcium to form calcium oxalate crystals and stones.  Although this happens mainly in the kidneys, it can also happen in other parts of the body.  Extra calcium oxalate in the body can damage the kidneys and cause other serious problems. Early diagnosis and treatment are key for the best outcomes.

Patients

person wearing green typing on laptop computer

Get started with an easy-to-understand overview of PH1.

squeezing fresh orange juice

This resource covers dietary and lifestyle changes, and other ways to help maintain kidney health if you or a loved one has PH1.

healthcare worker consulting with patient

Includes questions for your healthcare professional and how to work with your healthcare team.

two people talking, one taking notes

Living with PH1 can take a toll—and it's important to ask for help.

mother and father looking on newborn baby

Includes ways for parents to cope with the day-to-day aspects of PH1, and how they can speak with their children about this disease. Also includes suggestions for letters to school explaining PH1.

5 people in a group setting

Your PH1 story

Would you like to share your story so others can learn about your experience? If so, please click here and we’ll help you.

PH1 Research Studies

Check out opportunities to participate in research studies related to PH1.

Additional Resources

Living with PH1 or other chronic kidney diseases is a challenge, and there is a lot to learn. You can learn more with these resources on kidney disease.

microscope icon

Find out more about clinical trials, including what are what are they, and how to participate.

life preserver icon

A resource to help you learn more about insurance options.

banana icon

Diet and nutrition are an important part of living well with kidney disease. As your kidney disease progresses, your dietary needs might also change.

transplantation icon

A resource center about the transplantation process – from considering a transplant to life beyond transplant surgery.

IV bag icon

Has a broad range of information on dialysis and options within dialysis.

person with megaphone icon

Learn more about how to become an advocate for people with kidney disease.

Visit our Online Communities

Need personal support?


Call NKF Cares: (855.653.2273)
 

Support for this educational initiative is provided by Alnylam.

Alnylam logo