Network of Rare Blood Disorder Organizations

The Network of Rare Blood Disorder Organizations 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, advocate and lobby together in a coordinated fashion on key issues to secure and maintain patient access to comprehensive care while empowering patients who have rare blood disorders. The goals of the network are to ensure that finite health care dollars are spent rationally so as to promote the health of our citizens, reduce pain and suffering, and help people to live as nearly normal lives as possible and to raise the level of awareness and knowledge of the patient groups’ roles in the following key issues:

• Importance of patient registries to facilitate access to quality care and existing and emerging therapies
• Advantages of specialized care centers for complex rare disorders
• Improved access to drug therapies
• Tracking of blood and blood products to permit inventory management and effective recall and notification procedures
• Need for active adverse reaction reporting and post-marketing surveillance of therapies used to treat these disorders
• Treatment guidelines
• Educational guidelines to maintain same level of education across Canada
• Orphan drug legislation

In 2012, the Network of Rare Blood Disorder Organizations has been able to continue its work thanks to the generous support of: