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

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.

Vision and challenges of a cartographic representation of expert medical centres for rare diseases.

In Germany, many highly specialized facilities for the diagnosis and treatment of rare diseases exist. However it is quite difficult for patients to find the required specialists because of the fact that information on the internet is scattered and of variable quality. The German Federal Ministry of Health initiated several activities to address this issue. This paper describes the project se-atlas which aims at presenting the medical care options for people with rare diseases on an interactive map and in a list format. Potential users of this resource will be patients and their relatives, doctors, non-medical personnel and the general public. Most information derived from the data sets is already listed in ORPHANET. The project's primary goals are to steadily increase the data set and to ensure its quality. This paper presents the goals and measures taken in this project. It gives an overview of the challenges implementing such a new service and the visions behind.