• Stud Health Technol Inform · Jan 2018

    Mapping of Health Care Providers for People with Rare Diseases - From Vision to Implementation.

    • Johanna Schaefer, Niels Tegtbauer, Wulf Pfeiffer, Thomas O F Wagner, and Holger Storf.
    • Medical Informatics Group, University Hospital Frankfurt, Frankfurt am Main, Germany.
    • Stud Health Technol Inform. 2018 Jan 1; 247: 940-944.

    Abstractse-atlas - the health service information platform for rare diseases - is part of the German National Action Plan for People with Rare Diseases. The website www.se-atlas.de provides an overview of health care providers and support groups focusing on rare diseases in Germany. Since the start of se-atlas in 2013, several strategies are being developed and evaluated. This paper gives an overview about the expectations and visions for se-atlas at the beginning of the project, the challenges and lessons learned within the project period and how se-atlas is implemented today.

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