Blue Faery's Patient Community Shares Practical Resources to Help Patients With HCC Manage Their Own Care
Cancer is complex and touches on the lives of people in an indelible, personal and intimate way. When we picture the players in cancer care, we may think of cancer research. We may visualize clinical treatment, and we may think of case management. Yet, these parts of cancer care do something with patients
, or do something to patients
. What we may not notice are the necessary supportive parts of care with which the patient “does something.” One of these is the patient advocacy organization.
Patient advocacy organizations have grown from the need for patients to share practical knowledge: to ask questions and receive tips as well as have a forum in which they can better manage their own care experience. Patient-focused forums may facilitate connections between patients, with patient groups, with current research programs and with current clinical trials applicable to the condition.
Some charitable organizations focus on providing connection and information related to a specific disease. Blue Faery focuses on Hepatocellular Carcinoma (HCC) also known as primary liver cancer. This HCC focus allows stakeholders such as patients, caregivers, physicians, researchers and others to connect and communicate on HCC topics that are pertinent to their area of interest, and to gain the most value from their involvement in the community. The essential goal of Blue Faery’s patient community is to improve the quality of life for HCC patients, support their caregivers and give them hope, information and a voice. Blue Faery’s ultimate goal is to save people from HCC.
Blue Faery derives its name from our founder’s sister, who was affectionately known as the “Blue Faery” and who succumbed to HCC at a young age. To provide the highest-value community experience, Blue Faery provides patients with HCC and caregivers with a range of focused resources. Blue Faery curates liver cancer news, provides lists of paid HCC clinical trials, and maintains other HCC resources tailored to the needs of patients with HCC and their caregivers. The resources include a glossary, explanations of symptoms, diagnostic approaches, stages and progression, treatment options and HCC statistical information. Blue Faery hosts a Liver Cancer Community
for patients and caregivers. The online community forum enables HCC patients and their caregivers to share their stories, connect with other patients, make new friends and receive peer support.