Development, Implementation, and Preliminary Results of a Novel Social Network for Rare Disease Communities: Mixed Methods Study
Lara Fendrich, Henriette Högl, Ralf Schmidt, David Bascom, Armin Berger, Max Lübbering, Gundula Ernst, Justus Schumacher, Sabrina Hölzer, Lorenz Grigull · 2026
Read Development, Implementation, and Preliminary Results of a Novel Social Network for Rare Disease Communities: Mixed Methods Study by Lara Fendrich, Henriette Högl, Ralf Schmidt, David Bascom, Armin Berger, Max Lübbering, Gundula Ernst, Justus Schumacher, Sabrina Hölzer, Lorenz Grigull (2026) in the Tower of Babel, a free online library of public-domain works preserved in clean, searchable text. No sign-up. The full text is served as a plain-text file at a predictable URL, where text is present: https://antarctic-labs.com/tower-of-babel/pmc-13179036.txt.
Description
Lara Fendrich and co-authors describe Unrare.me, a social network built for people touched by rare diseases, in a 2026 study. About twenty million Europeans live with such diseases and often face long waits for diagnosis and few peers nearby.
Patient groups, clinicians, psychologists, and designers shaped the app together, and it launched in late 2023. Four months later, 270 users rated it. Most joined to meet others in the same situation, and many also sought expert input. Scores for ease of use, design, and data security ran high. Six in ten users found at least one match. Users asked for better matching and group chat next.
Catalog record
| CREATOR | Lara Fendrich, Henriette Högl, Ralf Schmidt, David Bascom, Armin Berger, Max Lübbering, Gundula Ernst, Justus Schumacher, Sabrina Hölzer, Lorenz Grigull |
|---|---|
| YEAR | 2026 |
| COLLECTION | PAPERS |
| FORMAT | TXT |
| FILE SIZE | 37 KB |
| VERSION | 1.0 |
| LICENSE | CC BY 4.0 |
| RIGHTS | CC BY |
| SOURCE | Europe PMC |