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Table 1 Needs expressed by participants

From: 10th European Conference on Rare Diseases & Orphan Products (ECRD 2020)

AreaRequest
Patient’s information-diaryFever attacks, symptoms registration Repository of health information12
5
CommunityOnline communities - patient to patient Direct connection with physicians14
11
Personal agendaCalendar: therapy, visits, exam scheduling alerts (appointments, deadlines, reminders)13
4
Clinical/practical informationDisease information
Legal information-patients’ rights
20
7