Rare diseases affect at least four million people and their families in Germany, whose lives are often characterized by long diagnosis paths and severe health burdens. With more than 6,000 different clinical pictures, rare diseases represent an enormous challenge for the healthcare system. A lack of data, insufficient funding and regulatory hurdles make care and research difficult. At the same time, technological advances in diagnostics, gene and cell therapies, and digitalization offer great opportunities to sustainably improve the care of patients.
The Eva Luise and Horst Köhler Foundation is calling for a cross-departmental strategy focussing on four key areas of action:
- Improve the quality of care through the expansion and funding of specialized centers and the implementation of standardized patient pathways.
- Supporting research and drug development through innovative financing models and accelerated approval processes.
- Digitizing and leveraging data through a national patient registry and integrating rare diseases into digital health solutions.
- Improve early detection by expanding newborn screening and raising awareness in medical education.
A health care system based on solidarity that implements these measures can not only improve the quality of life of those affected, but also open up innovation potential for medicine as a whole and for Germany as a business location.
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