Use and importance of different information sources among patients with rare diseases and their relatives over time: a qualitative study

• Những tác giả chính: Svenja Litzkendorf (Tác giả), Martin Frank (Tác giả), Ana Babac (Tác giả), Daniel Rosenfeldt (Tác giả), Franziska Schauer (Tác giả), Tobias Hartz (Tác giả), J.-Matthias Graf von der Schulenburg (Tác giả)
• Định dạng: Sách
• Được phát hành: BMC, 2020-06-01T00:00:00Z.
• Những chủ đề: article
• Truy cập trực tuyến: Connect to this object online.

Abstract Background Finding reliable information on one of more than 7000 rare diseases is a major challenge for those affected. Since rare diseases are defined only by the prevalence criterion, a multitude of heterogeneous diseases are included. Common to all, however, are difficulties regarding in...