Useful links
Explore trusted organizations, advocacy groups, and educational resources related to Primary Hyperoxaluria and rare kidney conditions.
Oxalosis & Hyperoxaluria Foundation (OHF)
A US-based nonprofit dedicated to improving the care and treatment of patients with Primary Hyperoxaluria and related conditions. Offers research updates, webinars, and support resources for patients and families around the world.
PH Selbsthilfe Deutschland
The German self-help group for people affected by Primary Hyperoxaluria. Provides patient information, events, and community support within Germany. PH Europe receives generous support from this organization.
VKS – Dutch Society for Metabolic Diseases
Supports patients with rare metabolic diseases in the Netherlands, including PH. Offers disease-specific information, news on research, and opportunities for patient networking.
AIRG-France – Association pour l’Information et la Recherche sur les maladies Rénales Génétiques
A French patient advocacy group focused on genetic kidney diseases. Promotes awareness, medical research, and support for patients living with conditions like PH.
Nephro.TV
An educational video platform for nephrology topics. Includes expert interviews, animations, and explanations about kidney function and diseases — helpful for patients, caregivers, and healthcare professionals.
OxalEurope
A European research network focused on Primary Hyperoxaluria and related disorders. Promotes clinical collaboration and research in diagnostics, treatments, and patient outcomes.
APHES – Asociación de Pacientes con Hiperoxaluria España
www.asociacionaphes.wordpress.com
Spanish-language resource for PH patients and families. Shares stories, treatment updates, and local support options for the Spanish-speaking community.