Last updated: August 17, 2026
aHUS syndrome
The websites below will direct you to other Canadian and international rare disease organizations, including some that focus specifically on aHUS:
aHUS Alliance (Worldwide): http://www.ahusallianceaction.org/
The aHUS Foundation (USA): http://atypicalhus.ning.com/ and https://www.ahus.org/
A Parent’s Perspective – aHUS BOOTCAMP: http://atypicalhus.ning.com/page/a-parents-perspective-ahus
The National Renal Complement Therapeutics Centre in Newcastle (UK): http://www.atypicalhus.co.uk/
aHUS UK (Patient Support Group in the United Kingdom): http://ahusuk.org/
aHUS Patient Support Group Australia: http://ahusaustralia.org.au/
aHUS Nederland (Dutch patient support group): https://ahus.nl/
Cureihus (Dutch research study on aHUS): http://cureihus.nl/
aHUS Source (aHUS Resource by Alexion): http://ahussource.com/
Network of Rare Blood Disorder Organizations: http://www.nrbdo.ca/
CORD – Canadian Organization for Rare Disorders: http://raredisorders.ca/
BPC (Better Pharmacare Coalition): http://www.betterpharmacare.com/
RQMO – Le Regroupement Québécois des Maladies Orphelines: www.rqmo.org/
NORD – National Organization for Rare Disorders (United States): https://rarediseases.org/rare-diseases/atypical-hemolytic-uremic-syndrome/
Rare Connect (aHUS Community): https://www.rareconnect.org/en/community/atypical-hemolytic-uremic-syn
Genetics Home Reference (guide to understanding genetic conditions): https://ghr.nlm.nih.gov/
The Kidney Foundation of Canada: http://www.kidney.ca/
The Canadian Society of Nephrology: https://www.csnscn.ca/
Canadian Association of Paediatric Nephrologists: http://www.capneph.ca/
Canadian Hematology Society: http://canadianhematologysociety.org/
Answering TTP: https://sites.google.com/site/answeringttp
Rare Disease Foundation: https://www.rarediseasefoundation.org/
Orphanet: http://www.orpha.net
Eurordis: http://www.eurordis.org/
Rare Renal.Org: http://rarerenal.org/rare-disease-groups/
CADTH (Canadian Agency for Drugs and Technologies in Health): https://www.cadth.ca/eculizumab-15
aHUS Registry: http://www.ahusregistry.com
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