Welcome to the website of

Based on the German PH Selbsthilfe, we have joined forces as pan-European advocates for patients with primary hyperoxaluria. We are pleased to inform you about this rare metabolic disease and hope that you find our pages informative and appealing.

The attached map shows you where we all are currently located and which languages we all speak. You are also welcome to contact us if you have specific questions. We would of course be pleased to welcome you as a member later on!

About Us




Here some impressions of the RAREDISEASEDAY 2020..

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OxalEurope Meeting

The Meeting is postponed to December 1st 2020, either as face to face, or depending on the situation, as web based Meeting.

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The next meeting of the European PH patient group         

will take place together with the meeting of the German PH self-help on 19.09.2020 in the Children's Kidney Centre in Bonn.

Day for Organ Donation and Transplantation

June 6, 2020

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Patient reports

Diagnosis after acute renal failure.

Patient report on primary hyperoxaluria type 1..

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Eva (20 month old) with PH2.

Patient report of a family on primary hyperoxaluria type 2 ..

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Late diagnosis after multiple kidney stones and complications after transplantation.

Very emotional report on primary hyperoxaluria type 1..

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Movement, thanks to organ donation!

Theresa has primary hyperoxaluria type 1 and she runs after a combined liver-kidney transplantation at the Bonn-marathon..

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Combined liver and kidney transplantation

A patient tells what she experienced before, during and after her combined liver and kidney transplantation..

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"Despite everything, I have not given up hope.."

A patient reports on the course of her disease..

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"Again and again pain and anxiety"

A patient report from Brianda with PH1 from Spain..

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Abulena, 12 years old, speaks about hyperoxaluria.


Theresa, 25 years old, speaks about hyperoxaluria.


Fatih, 9 years old, talks about his experiences with hyperoxaluria.


Rabea, 19 years old, speaks about hyperoxaluria.


Please contact us


PH-Selbsthilfe e.V., c/o. Michaela Sandkaulen, Monschauer Straße 20, 41751 Viersen, Deutschland


+49 (0) 2162 1022022

Email Address:


You’ll Never Walk Alone!