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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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Community Voices

What’s in your rare disease “toolkit”?

<p>What’s in your <a href="https://themighty.com/topic/rare-disease/?label=rare disease" class="tm-embed-link  tm-autolink health-map" data-id="5b23ceb000553f33fe99b3c3" data-name="rare disease" title="rare disease" target="_blank">rare disease</a> “toolkit”?</p>
4 people are talking about this
Community Voices

What helps you get better sleep?

<p>What helps you get better sleep?</p>
Community Voices

What Questions Do You Have About PH1?

<p>What Questions Do You Have About PH1?</p>
Community Voices

How do you relieve stress?

<p>How do you relieve stress?</p>
Community Voices

How do you talk to others about your rare disease?

<p>How do you talk to others about your <a href="https://themighty.com/topic/rare-disease/?label=rare disease" class="tm-embed-link  tm-autolink health-map" data-id="5b23ceb000553f33fe99b3c3" data-name="rare disease" title="rare disease" target="_blank">rare disease</a>?</p>
Community Voices

How do you stay hydrated throughout the day?

<p>How do you stay hydrated throughout the day?</p>
Community Voices

What do you wish you had more of?

<p>What do you wish you had more of?</p>
2 people are talking about this
Community Voices

What do you wish others knew about your rare disease?

<p>What do you wish others knew about your <a href="https://themighty.com/topic/rare-disease/?label=rare disease" class="tm-embed-link  tm-autolink health-map" data-id="5b23ceb000553f33fe99b3c3" data-name="rare disease" title="rare disease" target="_blank">rare disease</a>?</p>
Community Voices

What do you wish you had more of this week?

<p>What do you wish you had more of this week?</p>
Community Voices

How many doctors did you see before receiving your rare disease diagnosis?

<p>How many doctors did you see before receiving your <a href="https://themighty.com/topic/rare-disease/?label=rare disease" class="tm-embed-link  tm-autolink health-map" data-id="5b23ceb000553f33fe99b3c3" data-name="rare disease" title="rare disease" target="_blank">rare disease</a> diagnosis?</p>