Abstract
Purpose of ReviewRare bone diseases constitute ~ 5% of all known rare diseases and can require complex, multidisciplinary care. Advancing access to current medical knowledge is an important strategy for improving care for rare bone diseases throughout the world. To support this goal, the Rare Bone Disease Alliance launched the Rare Bone Disease TeleECHO in 2019.Recent FindingsThe Rare Bone Disease TeleECHO is a monthly video teleconference that fosters a collegial community of practice and opportunities for active learning through interactive case-based learning. TeleECHO relies on a hub-and-spoke model, where medical professionals at the “hub” provide support and expertise for other healthcare providers, or the “spokes”. Evidence of the global reach of the program as well as qualitative feedback from registrants supports the need for rare bone disease education and the value of the TeleECHO model.SummaryThe Rare Bone Disease TeleECHO helps meet the challenge of disseminating rapidly expanding rare bone disease knowledge by leveraging telehealth.
Highlights
Rare bone diseases constitute an important fraction (~ 5%) of all known rare diseases and typically require complex, lifelong management [1]
The Rare Bone Disease Alliance (RBDA), a program of the Osteogenesis Imperfecta Foundation (OIF), is a coalition of twelve rare bone disease advocacy organizations, clinicians, and researchers focused on educating medical professionals, expanding research, and assisting patients and communities affected by rare skeletal diseases
It believes that expanding access to continuing medical education on rare bone disease topics for bone health clinicians and researchers is a critical goal for improving the care of people with rare diseases worldwide
Summary
Rare bone diseases constitute an important fraction (~ 5%) of all known rare diseases and typically require complex, lifelong management [1]. Adapting the TeleECHO Model to Support Rare Bone Disease manager. The medical faculty “hub” consists of six rare bone disease specialists who develop the annual agenda, identify speakers, and support topic experts during the case discussions portion of the ECHO sessions.
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