Welcome to the website of

Featured by the PH&HP-team the European advocacy group for patients with primary hyperoxaluria welcomes you! The pages you will visit are based on individual input of medical professionals, patients, parents, translators, artists, IT specialists and friends of PH Europe. All the content presented is independent of any outside sponsoring, with the exception of grants received from the German PH Self-support group so far. Our page is the source of first information about a rare disease and guidance for patients wherever they live in Europe. The input from patients and parents telling their individual stories is here of paramount importance. Nobody has received any earnings or reimbursement for her/his input. The idealism to help has been the main driver, which should remain, as it is the best motivator for such a great project. Hence, many, many thanks, for all who have helped so far! Let us move forward together and please, remain supporting us!

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About Us

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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Clinical signs and symptoms

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Diagnostic evaluations

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Current treatment options

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Abulena, 12 years old, speaks about hyperoxaluria type 1.

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Theresa, 25 years old, speaks about hyperoxaluria type 1.

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Rabea, 19 years old, speaks about hyperoxaluria type 1.

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Fatih, 9 years old, talks about his experiences with hyperoxaluria type 3.

Contact

Please contact us

Address

PH-Europe, c/o. David Attar, Franzensbaderstrasse 23, 14193 Berlin, Deutschland

Phone:

+49 (0) 163 4000 987

Email Address:

info@ph-europe.net

You’ll Never Walk Alone!

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