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

Stud Health Technol Inform. 2018:247:940-944.

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.

Keywords: Information Portal; Patient Information; Rare Diseases.

MeSH terms

  • Germany
  • Health Personnel*
  • Humans
  • Rare Diseases*
  • Self-Help Groups