Mapping of Health Care Providers for People with Rare Diseases - From Vision to Implementation
Johanna Schaefer1, Niels Tegtbauer1, Wulf Pfeiffer1
1Medical Informatics Group, University Hospital Frankfurt, Frankfurt am Main, Germany.
Abstract:
se-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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