Mapping of Health Care Providers
for People with Rare Diseases

From digital to real:
se-atlas engages in Germany-wide project at the interface between computer science and medicine

"Share your colours" is this year's motto of Rare Disease Day, which has been organised annually on the last day of February since 2008 under the aegis of EURORDIS, the European Alliance of Patient Organisations - with increasing attention. "Share your colours" invites people affected by rare diseases in particular to "show their colours".

This is also a special day for se-atlas. With the se-atlas, we not only contribute to patient care in the field of rare diseases, but also work on various projects to improve conditions. An outstanding example is the joint project "Collaboration on Rare Diseases (CORD)", which is currently being funded by the BMBF as part of the medical informatics initiative.

In addition to the 20 university hospitals, many other partners are also involved in the national project in order to be able to jointly use digital information from diagnostics, therapy and research in accordance with data protection - the aim is to substantially improve the quality of life of patients with rare diseases. The project is led by the Berlin Institute of Health (BIH).

The central message of this year's Rare Disease Day campaign is: RARE ARE MANY. Rare is strong. Rare is confident. "Rare diseases are not rare at all. By definition, there are very few people affected per disease, but since there are an estimated 8,000 rare diseases, there are a lot of them," says Dr Josef Schepers, BIH coordinator of CORD-MI "In Germany, it is estimated that there are about four million people." Therefore, it is especially important to use the existing data for rare diseases. The medical informatics initiative, which starts at the interface between informatics and medicine, creates excellent conditions for this and brings (medical) informatics specialists and doctors together.

In the first few months of funding, the first important breakthroughs have already been achieved - understandably a very large undertaking with so many partners with different systems and approaches.

  • What data is important and should be collected?
  • How do rare diseases become more visible - that is, how can their coding be improved?
In health care, these are important questions. The team of the se-atlas is contributing its expertise on the care and research situation of rare diseases, which it has built up over the years, to the CORD project. A long-term improvement in the coding of rare diseases in health care, which is becoming more comprehensive as a result, can lead to an improved allocation of diseases to health care facilities in the se-atlas. This will enable the se-atlas to better reflect the reality of care and provide more accurate information.