At the invitation of the Federal Government’s Patient Representative, Stefan Schwartze MdB, representatives from politics, self-help, science, and healthcare gathered in Berlin on January 26, 2026, for “Patient’s Day” to discuss central issues of patient orientation. The focus was on access to healthcare, strengthening health literacy, and enforcing patient rights – all topics of special importance to people with rare diseases.
Following welcome remarks by the Patient Representative and the Federal Minister of Health, Nina Warken MdB, Prof. Dr. Annette Grüters-Kieslich, Chairwoman of our foundation, participated in the panel discussion to bring the viewpoints and special needs of people with rare diseases to the table. Together with Katharina Graffmann-Weschke (Stiftung Unabhängige Patientenberatung Deutschland), Ulrich Langenberg (Managing Physician, German Medical Association), and Prof. Dr. Doris Schaeffer (Bielefeld University), she discussed how patient orientation can be effectively strengthened in the healthcare system.
Where Care Becomes Especially Complex
The discussion made it clear that people with rare diseases often experience structural weaknesses of the healthcare system earlier and more intensely than other patient groups. Lengthy paths to the right diagnosis, unclear responsibilities, lack of information, and limited care options shape the everyday lives of many affected. As shown: The high demands they face are not due to a lack of competence, but the result of a system that has not yet sufficiently provided orientation, coordination, and support.
Or, as Prof. Dr. Grüters-Kieslich put it: “For people with rare diseases, health literacy is not an extra. It is essential for being able to navigate such a highly complex system and exercise their rights.”
Patients and their families affected by rare diseases are often forced to engage early and intensively with medical, legal, and organizational matters to gain access to appropriate care. The question of patient rights also plays a central role: formal rights only have an impact if they are known, understood, and can be upheld in practice. Particularly in the context of rare diseases, it becomes clear that alongside legal provisions, reliable structures, transparent information, and well-networked stakeholders are needed.
Rare Diseases as a Catalyst for True Patient Orientation
The annual reception once again highlighted the importance of dialogue between policy, care, and those directly affected. We thank the Federal Government’s Patient Representative for the opportunity to contribute the perspectives of people with rare diseases to this vital discussion. As a foundation, we will continue to work together with policymakers and partners in the healthcare sector to strengthen patient orientation where it is most urgently needed.
Impressions from Patient’s Day
Photos: Sera Zöhre Kurc
