The Rare Disease Person's Card Implementation Strategy in Portugal☆

摘要: Abstract The Rare Disease Person's Card (RDPC) aims to identify and display information regarding rare diseases. It was created through a collaborative work between two major Portuguese heath care stakeholders, namely the Ministry of Health Shared Services (SPMS) Directorate General (DGS), following EU resolutions. card patient disease, as well text explaining special needs in emergency situations. disease is coded ORPHA code system. RDPC implemented Data SharingPlatform. There are three distinct circuit phases RDPC: requisition, activation release. Patients use Patient Portal order activate card. Until March 16 2015, there were 828 cards requested 738 different About 51% requests still waiting by patients. 16% activated awaiting approval printing coordinator physician. 33% sent patient's address, thereby completing circle. increasing awareness empowerment disease's patients, pushing forward project improving care.