Patient Organisations
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NEPHTHI – Npatient organisation – “the Nephronophthisis – Network” Please contact Tatjana Kordic 
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Pro RetinaGerman patient organisation for People with degeneration of the Retina
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PKD – CurePatient organisation für patients with Polycystic Kidney Disease, mainly in adulthood.
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SE – AtlasMaps for patient organisations for people with rare diseases. |
Societies
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German Society for pediatric nephrology |
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Research for RareGerman Networks on Rare Diseases |
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ACHSEAllianz Chronischer Seltener Erkrankungen |
further registries
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Registry on ARPKDARegPKD |
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Registry on pediatric ADPKDADPedKD |