Table 5.

Worldwide organizations focusing on rare kidney diseases

Organization	Acronym	Location	Main Focus
European Patient Advocacy Group within European Rare Kidney Disease Reference Network	ePAG in ERKNet	Europe	All rare kidney diseases
Federation of European Patient Groups with rare/genetic kidney diseases	FEDERG	Belgium	All rare/genetic kidney diseases
Alport Syndrome Foundation		USA	Alport syndrome
Atypical hemolytic uremic syndrome alliance	aHUS alliance	International	Atypical hemolytic uremic syndrome
Ciliopathy Alliance		Europe	Ciliopathies including polycystic kidney diseases
NephCure Kidney International		USA	Rare nephrotic syndromes
NephcEurope		Europe	Rare nephrotic syndromes
Cystinosis Network Europe		Europe	Nephropathic cystinosis
Cystinosis Research Foundation		USA	Nephropathic cystinosis
Polycystic Kidney Disease Foundation	PKD Foundation	USA	Polycystic kidney disease
Rare Kidney Disease Foundation		USA	Adult tubulointerstitial kidney disease
Association pour l’Information et la Recherche sur les Maladies rénales Génétiques France, España	AIRG. AIRG-E	France, Spain	Genetic rare kidney diseases