Network of Rare Blood Disorder Organizations

The Network of Rare Blood Disorder Organizations (NRBDO) is a coalition of national patient groups, formed to share the best practices in health care delivery for people with rare blood disorders such as hereditary angioedema; aplastic anemia, Fanconi anemia, paroxysmal nocturnal hemoglobinuria (PNH), and myelodysplasia; primary immune deficiency; porphyria, sickle cell disease, thalassemia, thrombotic thrombocytopenic purpura (TTP), hemophilia, and von Willebrand disease.

They work and advocate together in a coordinated fashion, toward high quality, effective, accessible, interdisciplinary care for all Canadians affected by rare blood disorders. ​Their mandate is to improve the healthcare delivery for people affected by rare blood disorders by:
-working together to ensure the best comprehensive care
-ensuring a safe and secure blood system
-supporting the members by sharing best practices in governance
-developing skills in health care advocacy
-avoiding overlap and inefficiencies