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This is a public group where you can connect with others affected by primary hyperoxaluria type 1 (PH1), share your PH1 experiences, discover resources and events and find support along the PH1 journey.
What is Primary Hyperoxaluria Type 1? Primary hyperoxaluria type 1, or PH1, is a genetic rare disease that primarily affects the kidneys. PH1 causes oxalate, a waste product that your kidneys typically remove from your body through the urine (pee), to build up in your kidneys. Excess oxalate combines with calcium to form kidney stones and cause serious damage to your kidneys and other parts of your body.
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What helps you get better sleep?
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What Questions Do You Have About PH1?
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How do you relieve stress?
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How do you talk to others about your rare disease?
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How do you stay hydrated throughout the day?
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What do you wish you had more of?
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What do you wish others knew about your rare disease?
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What do you wish you had more of this week?
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How many doctors did you see before receiving your rare disease diagnosis?
