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

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Title: Development, Implementation, and Preliminary Results of a Novel Social Network for Rare Disease Communities: Mixed Methods Study.
Authors: Fendrich L; Center for Rare Diseases, University Hospital Bonn, Venusberg-Campus 1, Geb. 13 (BMZ), Bonn, 53127, Germany, 49 228 287 51472.; Pediatric Oncology, Hematology and Immunology, Olgahospital, Klinikum Stuttgart, Stuttgart, Germany., Högl H; Kindernetzwerk e.V, Aschaffenburg, Germany., Schmidt R; digitalUX, Uplengen, Germany., Bascom D; 99 Grad, Wiesbaden, Germany., Berger A; Fraunhofer Institute for Intelligent Analysis and Information Systems, Bonn, Germany., Lübbering M; Fraunhofer Institute for Intelligent Analysis and Information Systems, Bonn, Germany., Ernst G; Hannover Medical School, Hanover, Germany., Schumacher J; Center for Rare Diseases, University Hospital Bonn, Venusberg-Campus 1, Geb. 13 (BMZ), Bonn, 53127, Germany, 49 228 287 51472., Hölzer S; Ernst Abbe University of Applied Sciences Jena, Jena, Germany., Grigull L; Center for Rare Diseases, University Hospital Bonn, Venusberg-Campus 1, Geb. 13 (BMZ), Bonn, 53127, Germany, 49 228 287 51472.
Source: JMIR human factors [JMIR Hum Factors] 2026 May 15; Vol. 13, pp. e80230. Date of Electronic Publication: 2026 May 15.
Publication Type: Journal Article
Journal Info: Publisher: JMIR Publications Inc Country of Publication: Canada NLM ID: 101666561 Publication Model: Electronic Cited Medium: Internet ISSN: 2292-9495 (Electronic) Linking ISSN: 22929495 NLM ISO Abbreviation: JMIR Hum Factors Subsets: MEDLINE
Database: MEDLINE Ultimate
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  Data: <searchLink fieldCode="AU" term="%22Fendrich+L%22">Fendrich L</searchLink>; Center for Rare Diseases, University Hospital Bonn, Venusberg-Campus 1, Geb. 13 (BMZ), Bonn, 53127, Germany, 49 228 287 51472.; Pediatric Oncology, Hematology and Immunology, Olgahospital, Klinikum Stuttgart, Stuttgart, Germany.<br /><searchLink fieldCode="AU" term="%22Högl+H%22">Högl H</searchLink>; Kindernetzwerk e.V, Aschaffenburg, Germany.<br /><searchLink fieldCode="AU" term="%22Schmidt+R%22">Schmidt R</searchLink>; digitalUX, Uplengen, Germany.<br /><searchLink fieldCode="AU" term="%22Bascom+D%22">Bascom D</searchLink>; 99 Grad, Wiesbaden, Germany.<br /><searchLink fieldCode="AU" term="%22Berger+A%22">Berger A</searchLink>; Fraunhofer Institute for Intelligent Analysis and Information Systems, Bonn, Germany.<br /><searchLink fieldCode="AU" term="%22Lübbering+M%22">Lübbering M</searchLink>; Fraunhofer Institute for Intelligent Analysis and Information Systems, Bonn, Germany.<br /><searchLink fieldCode="AU" term="%22Ernst+G%22">Ernst G</searchLink>; Hannover Medical School, Hanover, Germany.<br /><searchLink fieldCode="AU" term="%22Schumacher+J%22">Schumacher J</searchLink>; Center for Rare Diseases, University Hospital Bonn, Venusberg-Campus 1, Geb. 13 (BMZ), Bonn, 53127, Germany, 49 228 287 51472.<br /><searchLink fieldCode="AU" term="%22Hölzer+S%22">Hölzer S</searchLink>; Ernst Abbe University of Applied Sciences Jena, Jena, Germany.<br /><searchLink fieldCode="AU" term="%22Grigull+L%22">Grigull L</searchLink>; Center for Rare Diseases, University Hospital Bonn, Venusberg-Campus 1, Geb. 13 (BMZ), Bonn, 53127, Germany, 49 228 287 51472.
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