Abstract
During the COVID-19 outbreak, the European Reference Network on Rare Bone Diseases (ERN BOND) coordination team and Italian rare bone diseases healthcare professionals created the “COVID-19 Helpline for Rare Bone Diseases” in an attempt to provide high-quality information and expertise on rare bone diseases remotely to patients and healthcare professionals. The present position statement describes the key characteristics of the Helpline initiative, along with the main aspects and topics that recurrently emerged as central for rare bone diseases patients and professionals. The main topics highlighted are general recommendations, pulmonary complications, drug treatment, trauma, pregnancy, children and elderly people, and patient associations role. The successful experience of the “COVID-19 Helpline for Rare Bone Diseases” launched in Italy could serve as a primer of gold-standard remote care for rare bone diseases for the other European countries and globally. Furthermore, similar COVID-19 helplines could be considered and applied for other rare diseases in order to implement remote patients’ care.
Highlights
The coronavirus disease 2019 (COVID-19) caused by the novel coronavirus SARS-CoV-2 had its outbreak in December 2019 in China
The non-invasive ventilatory approach is currently not recommended for patients with viral infections complicated by pneumonia because Non-Invasive Ventilation (NIV) does not necessarily change the natural disease course [13]; on the other hand, NIV has been shown to be effective in the management of Acute Respiratory Failure (ARF) in subjects with Osteogenesis Imperfecta (OI) [14]
The present position statement highlights the fundamental role of remote high quality of care for rare bone diseases (RBD) during the COVID-19 outbreak
Summary
The coronavirus disease 2019 (COVID-19) caused by the novel coronavirus SARS-CoV-2 had its outbreak in December 2019 in China. In order to tackle this emergency, the European Reference Network on Rare Bone Diseases (ERN BOND) coordination team and Italian RBD healthcare professionals created the “COVID-19 Helpline for Rare Bone Diseases” in an attempt to provide high quality-information and expertise on RBD remotely to patients and healthcare professionals.
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