The new year began for our foundation with an important political exchange: On January 12, 2026, Eva Luise Köhler and Prof. Dr. Annette Grüters-Kieslich, Chair of the Foundation Board and Executive Board, met with Federal Minister Karin Prien at the Federal Ministry for Education, Family Affairs, Seniors, Women, and Youth in Berlin.
The focus of the conversation was the daily reality of families with rare diseases and how family policy can systematically address their unique needs. Rare diseases are far more than a medical challenge: they shape the everyday life of entire families, often for many years, and affect nearly every aspect of life. At the same time, social developments are emerging that can increasingly hinder participation and support for vulnerable groups—making it even more important to pursue policies that promote cohesion, resilience, and prevention.
Family Policy as a Key Department
Rare diseases influence educational paths, social participation, and the work-life-care balance. Parents shoulder extensive caregiving and coordination tasks, siblings are often affected too, and psychosocial burdens become a prolonged part of many families’ lives. Most caregiving and support work is done by women with lasting impacts on career paths, income, and old-age provision. The discussion highlighted how crucial it is to relieve families early on and strengthen preventive approaches. Many challenges can be eased when help is offered in a timely and coordinated way.
This is why the family policy department plays a central role. The discussion made clear how important it is to further develop policy tools so they meet the particular and ongoing challenges faced by families with rare diseases and foster their participation in society.
Key Topics of the Exchange
“Families with rare diseases need support that truly reaches into their everyday lives—reliable and long-term,” emphasized Eva Luise Köhler and Prof. Dr. Annette Grüters-Kieslich. The conversation highlighted the following key areas where political support can be especially effective for families with rare diseases:
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Everyday relief and psychosocial support: Families need reliable support services that address their actual needs and can be used flexibly. Low-threshold and specialized offers can help secure stability and participation.
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Strengthening prevention: Early, well-coordinated help can prevent overload and contribute to long-term quality of life and participation.
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Interdisciplinary and cross-departmental collaboration: Complex living situations require solutions that go beyond boundaries of responsibility—from healthcare to youth and family policy to education and social security.
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Incorporating family expertise: Families have extensive experience and everyday knowledge. When systematically included, support structures can be made more tailored and sustainable.
Federal Minister Prien expressed great interest in the perspectives of affected families and underlined the importance of different departments working together, focusing on the real-life situations of children and families. In light of societal changes that put solidarity and cohesion to the test, there is a growing need for political concepts that provide dependability and strengthen families with special burdens.
Outlook
Our sincere thanks go to Karin Prien for the open exchange. The conversation demonstrated the value of ongoing dialogue between politics and civil society when it comes to developing sustainable, long-term solutions.
