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
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