“Telemedicine is an important resource that can be profitably used both by the patient with haemophilia, who for the ordinary management of the disease and for consultations can, through this method, interact with his own haematologist in a simplified way from his own home, and from the same clinician for a more continuous and logistically less complicated management of the treatment “. Thus Cristina Cassone, president of FedEmo, the Federation of haemophilic associations, speaking at the online event “The importance of telemedicine in haemophilia, the REmoTe project” by the Rare Diseases Observatory. “Telemedicine – stresses Cassone – allows today to replicate the clinical-organizational processes currently used in patient management through the use of widely used software tools: in this way, communications between patient and specialist can take place in a more serene environment. and family, emptied from the hospital context, the documents and data produced are systematically archived and in some cases it is possible to receive and provide assistance services even remotely, limiting the movement of patients only to situations of strict necessity “. During the webinar it emerged that 52% of rare patients gave up exams and routine visits or rehabilitation therapies for fear of contagion; 46% of people encountered problems in healthcare (Iss and Uniamo data); 16% saw problems in accessing medicines due to shortages or health aids and transport. Therefore, telemedicine represents an undoubted resource to be strengthened as Covid-19 has shown, which in this sense has been an accelerator of ongoing processes. “Even in the world of haemophilia – confirms Cassone – there have been significant delays due to the pandemic emergency situation. We know that some patients have had to delay or postpone specialist visits or interventions, people were also worried about the supply of drugs. In short, routine visits were postponed out of caution. However, where there was need and urgency, the center has always made itself responsible and available to offer services as always “.” The various waves of the pandemic – he underlines – have made us understand how important territorial medicine and telemedicine were, because the patient does not have to move but it is necessary to bring assistance at home to the patient as close as possible through home services and telemedicine. The latter is a valid tool but still under construction “. “Hemophilia”, like rare diseases, “requires specialist visits, specialized centers, and telemedicine can help us. The patient is not yet accustomed to teleconsultation and television but is approaching them out of necessity because there is no other way at this moment ”, he concludes.
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