Category: Information & Opinion
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Information & Opinion
Rare Diseases in Focus: Health Policy Dialogue with Federal Health Minister Nina Warken
Rare diseases present special challenges for the healthcare system: They require specialized care, close networking between research and clinical practice, and sustainable long-term structures. In conversation with Federal Health Minister…
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Information & Opinion
“Affected families are incredibly strong and at the same time need reliable support”
On Rare Disease Day, Dr. Ulrike Köhler, a trustee of our foundation and jury member of the HanseMerkur Child Protection Award, spoke with HanseMerkur about the unique challenges faced by…
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Information & Opinion
Rare Diseases in Primary Care: Good Management Requires Expertise
Joint press release by the Federal Government Commissioner for Patients' Affairs and the Eva Luise and Horst Köhler Foundation for People with Rare Diseases on Rare Disease Day 2026…
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Information & Opinion
Rare Diseases: National Recognition of Specialist Expert Centers Launches
Care for people with rare diseases is being structurally strengthened: With a nationwide recognition process, specialized centers will now be designated according to uniform quality standards. The aim is to…
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Information & Opinion
“The best time to plant a tree was twenty years ago. The second best time is now.”
Twenty years ago, Horst Köhler spoke about responsibility, courage, and the opportunity to actively shape the future. His thoughts are more relevant today than ever. A reminder that offers guidance—especially…
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Information & Opinion
Statement on the Medical Register Law: What Now Matters for Rare Diseases
At the end of October, the Federal Ministry of Health presented a draft bill for a Medical Register Law—a key initiative for a modern, networked, and EU-compatible registry landscape. Together…
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Information & Opinion
Rare Diseases: Pioneers of Future Medicine
In the magazine "Future Medicine," our Chair Prof. Dr. Annette Grüters-Kieslich explains how research, networking, and targeted support in the field of rare diseases advance medicine as a whole –…
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Information & Opinion
Annual Report 2024: What We Achieved With Your Support
Our new Annual Report has arrived! Find out how we promote research and better care for people with rare diseases through projects, events, and initiatives.
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Information & Opinion
Invisible, Overburdened, Overlooked: Expert Forum on Women with Rare Diseases
At the Tagesspiegel Expert Forum "Women with Rare Diseases – Double Hurdle?" on September 24, 2025, experts from politics, medicine, industry, and patient advocacy, including Prof. Dr. Annette Grüters-Kieslich, Chairwoman…
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Information & Opinion
More than 4.5 million people in Germany live with a rare disease. Patients and families face long diagnostic journeys, limited treatment options, and fragmented structures. Rare diseases are not a…
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Information & Opinion
In Germany, four million people live with a rare disease — enough to fill the largest football stadium in Dortmund 50 times. However, unlike in football, those living with rare…
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Information & Opinion
Key demands for improving care for people with rare diseases
Concerned about the future of care for people with rare diseases, several position papers on the situation of rare disease patients in the German healthcare system have been produced in…