Development, Implementation, and Preliminary Results of a Novel Social Network for Rare Disease Communities: Mixed Methods Study

Lara Fendrich   ^{1, 2} , BSc, MD ;   Henriette Högl   ³ , MD ;   Ralf Schmidt   ⁴ ;   David Bascom   ⁵ , MDes ;   Armin Berger   ⁶ , BSc, MSc, PhD ;   Max Lübbering   ⁶ , BSc, MSc, PhD ;   Gundula Ernst   ⁷ , PD, PhD ;   Justus Schumacher   ¹ ;   Sabrina Hölzer   ⁸ ;   Lorenz Grigull   ¹ , MBA, MME, MD, Prof Dr Med

¹ Center for Rare Diseases, University Hospital Bonn, Bonn, Germany

² Pediatric Oncology, Hematology and Immunology, Olgahospital, Klinikum Stuttgart, Stuttgart, Germany

³ Kindernetzwerk e.V, Aschaffenburg, Germany

⁴ digitalUX, Uplengen, Germany

⁵ 99 Grad, Wiesbaden, Germany

⁶ Fraunhofer Institute for Intelligent Analysis and Information Systems, Bonn, Germany

⁷ Hannover Medical School, Hanover, Germany

⁸ Ernst Abbe University of Applied Sciences Jena, Jena, Germany