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
The information on this page is intended for scientific, educational, and general informational purposes. Clinical approaches, availability, and regulatory status may vary by country, institution, and medical indication. For individual medical decisions, readers should consult qualified healthcare professionals and accredited medical centers.
This article has been prepared by the NBScience editorial team within the scope of clinical research, biotechnology, and international medical information.
