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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…
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Information & Opinion
On the occasion of the International Day of Rare Diseases on 28 February 2025, the German Federal Government Commissioner for Patients' Affairs, Stefan Schwartze, MdB, and the Eva Luise and…
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Information & Opinion
Our new activity report is out
Find out how we are working to increase research and improve care for people living with rare diseases through funding projects, events and initiatives.
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Information & Opinion
Rare diseases affect millions of people in Germany and their families - an enormous challenge for our healthcare system. At the same time, technological advances in diagnostics, therapies and digitalization…
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Information & Opinion
White Paper ‘Rare Diseases Bavaria’ – A step into the future
On 7 October, the White Paper of the 'Bavaria for Rare Diseases' campaign was presented to the public at a press conference. Under the patronage of the Eva Luise and…