Links & Resources

The websites below will direct you to other Canadian and international rare disease organizations, including some that focus specifically on aHUS:

aHUS Alliance (Worldwide):
The aHUS Foundation (USA): and
A Parent’s Perspective – aHUS BOOTCAMP:
The National Renal Complement Therapeutics Centre in Newcastle (UK):
aHUS UK (Patient Support Group in the United Kingdom):
aHUS Patient Support Group Australia:
aHUS Nederland (Dutch patient support group):
Cureihus (Dutch research study on aHUS):
aHUS Source (aHUS Resource by Alexion):
Network of Rare Blood Disorder Organizations:
CORD – Canadian Organization for Rare Disorders:
BPC (Better Pharmacare Coalition):
RQMO – Le Regroupement Québécois des Maladies Orphelines:
NORD – National Organization for Rare Disorders (United States):
Rare Connect (aHUS Community):
Genetics Home Reference (a guide to understanding genetic conditions):
The Kidney Foundation of Canada:
The Canadian Society of Nephrology:
Canadian Association of Paediatric Nephrologists:
Canadian Hematology Society:
Answering TTP:
Rare Disease Foundation:
Rare Renal.Org:
CADTH (Canadian Agency for Drugs and Technologies in Health):
aHUS Registry: