PH1 is a rare kidney disease that can have a have major impact on a person’s health throughout their life.
Patients
Get started with an easy-to-understand overview of PH1.
This resource covers dietary and lifestyle changes, and other ways to help maintain kidney health if you or a loved one has PH1.
Includes questions for your healthcare professional and how to work with your healthcare team.
Living with PH1 can take a toll—and it's important to ask for help.
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.
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.
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.
Find out more about clinical trials, including what are what are they, and how to participate.
A resource to help you learn more about insurance options.
Diet and nutrition are an important part of living well with kidney disease. As your kidney disease progresses, your dietary needs might also change.
A resource center about the transplantation process – from considering a transplant to life beyond transplant surgery.
Has a broad range of information on dialysis and options within dialysis.
Learn more about how to become an advocate for people with kidney disease.
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Support for this educational initiative is provided by Alnylam.