Due to the small number of people affected and the variety of diseases, it is often difficult to make a quick and precise diagnosis and find an appropriate therapy. Research also faces particular challenges.
Dr. Martin Walger, Managing Director of the VDGH, explains: "Modern laboratory diagnostics provide clarity and open the door to medical help for those affected. Faster digitalization of care structures and the shared use of health data are important objectives from which people with rare diseases can benefit in particular."
The VDGH is a partner of the National Action Alliance for People with Rare Diseases (NAMSE), an alliance of federal ministries, patient associations and 25 umbrella organizations in the healthcare sector. Back in summer 2022, the action alliance called for an overall concept for the secondary use of health data that encompasses all stakeholders, including industrial research. The VDGH is now calling for the draft European Health Data Space (EHDS) published at EU level to be consistently pursued and for a national Health Data Utilization Act to be launched soon. "Only if all parties involved work closely together and share their expertise and data can we improve the care of patients with rare diseases," emphasizes Walger.
