Abstract
Author(s): Andrea J Wilson
According to the European Respiratory Society, patient advocacy organizations serve three roles: support and advise others; make changes happen and provide the patient’s perspective. Blue Faery is the only non-profit corporation in the United States that specifically devoted to fighting primary liver cancer, especially Hepatocellular Carcinoma (HCC), the second most common cause of cancer deaths worldwide. Blue Faery’s mission is to prevent, treat and cure primary liver cancer through research, education and advocacy. Blue Faery has five key values that drive the organization: commitment to outstanding service to patients and caregivers; competence with high quality products; cost effectiveness and efficiency; conscientious collaboration and communication and transparency.
These values ensure that the organization always puts its end users i.e. patients and caregivers above funders. Blue Faery supports and advises patients and caregivers through its educational materials, online community, one-onone peer support program and website that translates into nine languages specifically targeted at the HCC patient population. As a member of the Deadliest Cancers Coalition (DCC), Blue Faery works with other non-profits to make changes happen at the federal level.
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