Patients with rare diseases should have access to high–level medical care regardless of their location within the country. However, due to the scarcity of specialists in rare diseases, these patients often face significant challenges in accessing specialist medical care, requiring them to travel extensively to visit hospitals. In recent years, advancements in information and communication technology (ICT) have found applications across various sectors, including healthcare. Telemedicine, which has been included as a service under health insurance following the medical fee revision in Japan since April 2018, is a prime example of this integration. A survey among patients with HTLV–1–associated myelopathy (HAM) indicates a strong demand for online medical services, with patients and caregivers expressing high satisfaction due to the reduced burden that online medical care provides. To further promote telemedicine, it is essential to consider the relaxation of regulatory requirements, tailoring them to real–world needs and experiences.