Welcome to the website of

Featured by the PH&HP-team the European advocacy group for patients with primary hyperoxaluria welcomes you! 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

News

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Open petition from the German PH self support group

to all physicians who treat patients with kidney stone disease.

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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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Summary of the 1st virtual meeting of the European PH patient group from 19.09.2020

takes place as a virtual presentation on 11.10.2020 between 4.00 and 7.00 pm. Further information will follow..

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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Family with three daughters, two of them (6 and 3 years old) with PH type I

A patient report from Switzerland..

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Leo (12 years old) with PH III.

Patient report on primary hyperoxaluria type III..

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Videos

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Abulena, 12 years old, speaks about hyperoxaluria.

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Theresa, 25 years old, speaks about hyperoxaluria.

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

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Rabea, 19 years old, speaks about hyperoxaluria.

Contact

Please contact us

Address

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

Phone:

+49 (0) 2162 1022022

Email Address:

info@ph-europe.net

You’ll Never Walk Alone!

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