title: Social Media and Internet Resources for Patients with Blastic Plasmacytoid Dendritic Cell Neoplasm (BPDCN).
abstract: The incorporation of Internet resources and the use of social media among patients, clinicians, advocates, and researchers in the field of hematology and oncology are growing in importance. Utilization of online information sharing is rising, especially among those involved in rare blood cancer fields, which have generally featured a paucity of reliable, updated information. In particular, blastic plasmacytoid dendritic cell neoplasm (BPDCN), an uncommon, but highly aggressive hematologic malignancy, is one example of a cancer with limited information readily available to the general public. The infrequent incidence of BPDCN, the challenges in recognizing the disease and making a clinico-pathologic diagnosis, and the lack of standard therapies are some of the reasons accounting for the dearth of expert opinion, scientific publications and discussion, and accessibility of online information for patients. This article highlights social media and Internet sources available for patients and other healthcare stakeholders in the field of BPDCN and discusses our efforts to increase awareness and propagation of BPDCN electronic resources, including the founding of an online Twitter community, #BPDCN.
authors: Department of Leukemia, University of Texas, M.D. Anderson Cancer Center, Unit 428, PO Box 301402, Houston, TX, 77230-1402, USA. npemmaraju@mdanderson.org.
authors: Naveen
authors: N
authors: Pemmaraju
authors: The Elizabeth and Tony Comper MPN Program, Princess Margaret Cancer Center, Toronto, Ontario, Canada.
authors: Vikas
authors: V
authors: Gupta
authors: Aurora Research Institute, Aurora Health Care, Milwaukee, WI, USA.
authors: Michael A
authors: MA
authors: Thompson
authors: Department of Medical Oncology, Dana-Farber Cancer Institute, Harvard Medical School, Boston, MA, USA.
authors: Andrew A
authors: AA
authors: Lane
mesh_terms: D003713:Dendritic Cells / Q000166:cytology / Q000276:immunology / Q000378:metabolism; D066275:Health Information Exchange; D019337:Hematologic Neoplasms / Q000175:diagnosis / Q000473:pathology* / Q000523:psychology; D006801:Humans; D020407:Internet; D009196:Myeloproliferative Disorders / Q000175:diagnosis / Q000473:pathology* / Q000523:psychology; D061108:Social Media
keywords: #BPDCN; BPDCN; Disease-specific hashtag; Rare disease; Social media; Twitter