Prof. Dr. Annette Grüters-Kieslich, Chair of the Board and Scientific Director of our foundation, explains why involvement is worthwhile and why strong cooperation is crucial for rare diseases at this time.
Professor Grüters-Kieslich, what makes the Rare Disease Symposium such a special event?
The symposium is much more than just a scientific conference. It is a day when we come together to share ideas, stimulate thought and work together to shape the future of rare diseases. People from a variety of backgrounds — researchers, healthcare professionals, patients, politicians and members of the public — come together to learn from each other and develop solutions. It is precisely this diversity that creates the special atmosphere: warm, open and professional, with the shared goal of making a difference.
This year, the focus is on precision medicine. Why?
Because precision medicine offers enormous opportunities for people with rare diseases. The national strategy on gene and cell therapies will enable therapies to be developed more quickly, effectively and individually. This approach can be groundbreaking, especially for rare diagnoses where standard solutions are often lacking. Our keynote speaker, Anna Greka from Harvard Medical School, is a pioneer in this field — her work impressively demonstrates how understanding common disease mechanisms can lead to new treatment options for many rare diseases.
Who should mark 20 June in their calendar?
Anyone interested in the future of medicine, particularly rare diseases! Everyone is welcome, whether you are a researcher, clinician, patient representative, politician, or simply a committed citizen. The event is free and open to anyone who is interested. It is the combination of professional insight and personal encounters that makes this day so enriching. Many people reserve the date every year — the symposium has become a fixed meeting point for the rare disease community. Now more than ever, it is crucial that an alliance emerges to ensure that people with rare diseases can benefit from progress and innovation.
What are your hopes for this symposium and for the future?
I hope that we will work even more closely together. I hope that we will consistently consider the perspectives of people living with rare diseases when concrete projects emerge from the exchange. I also hope that we will take the energy of this day with us to bring innovations to healthcare. Our goal is clear: to create a medicine that leaves no one behind, especially those who are still too often overlooked today. The Rare Disease Symposium is an important step on this path.
Find out more and register her: 9. Rare Disease Symposium
