Registration 7th Rare Disease Symposium
Early detection in order to be able to act in the best possible way - this claim is particularly true for rare diseases. Prompt diagnosis, immediate initiation of the necessary therapies and competent support are often decisive for the course of the disease and ultimately for the lives of the patients.
In the meantime, modern methods are increasingly enabling rapid and efficient diagnosis, laying the foundation for personalized precision medicine - and at the same time raising very fundamental questions for our society. After all, prevention has many facets and is by no means just a matter for the healthcare system.
At the 7th Rare Disease Symposium of the Eva Luise and Horst Köhler Foundation, we will examine the possibilities and limits of prevention in the field of rare diseases from a medical, ethical and social perspective. Together we would like to consider which structures have proven successful and where rethinking and redirection is needed.
We cordially invite you:
Friday/ Saturday, June 9 and 10, 2023
at the Visitor and Training Center Berlin
KARL STORZ SE & Co. KG
Scharnhorststraße 3, 10115 Berlin
You can register for the event here: Registration 7th Rare Disease Symposium
10 continuing education points were granted by the Berlin Medical Association
Program (as of March 9, 2023) - Friday, June 9, 2023
Event language: German (exceptions marked)
| 10:30 | Start registration and coffee | |
| 11:00 | Welcome | Eva Luise Köhler |
| 11:05 | Preventive care of the future - thinking in social spaces, linking social and health care systems | Prof. Dr. Freia de Bock, Universitätsklinikum Düsseldorf |
| 11:30 | Research on prevention enables life and quality of life for people with rare diseases | Prof. Dr. Annette Grüters-Kieslich, Eva Luise und Horst Köhler Stiftung |
| 12:00 | The (success) story of newborn screening | Prof. Dr. Georg Hoffmann, Universitätsklinikum Heidelberg |
| 12:20 | Fr1da - Detect type 1 diabetes early and treat it well early on | Prof. Dr. Anette-Gabriele Ziegler, Helmholtz Zentrum München |
| 12:40 | Assured success story: Neonatal Screening for Congenital Hypothyroidism | Prof. Dr. Heiko Krude, Charité Universitätsmedizin Berlin |
| 13:00 | Success story in the making: Screening for Sickle Cell Disease | Dr. Stephan Lobitz, Gemeinschaftsklinikum Mittelrhein |
| 13:15 | Lunch Break | |
| 14:00 | Key note lecture: The Future of Newborn Screening is starting now | Dr. Stephen F. Kingsmore Rady Children's Hospital, San Diego (Presentation language: English) |
| 14:30 | Genetic Screening in Israel – an overview | Prof. Ohad Birk, Leiter des National Knowledge Center for Rare/ Orphan Diseases Israel (Presentation language: English) |
| 15:00 | Panel Discussion: Is Society Ready for Genetics-Based Newborn Screening? | Prof. Dr. Hans-Hilger Ropers, Max-Planck-Institut für molekulare Genetik; Prof. Dr. Dr.Christian Dierks, Dierks+Company; Prof. Dr. Markus Zimmermann, Universität Fribourg; Prof. Dr. Ute Spiekerkötter, Universitätsklinikum Freiburg Moderation: Prof. Dr. Annette Grüters-Kieslich, Eva Luise und Horst Köhler Stiftung |
| 15:45 | Farewell |
This will be followed by the ceremony for the 15th Eva Luise Köhler Research Award:
Berlin Brandenburgische Akademie der Wissenschaften (BBAW)
Jägerstraße 22-23 (entrance via Markgrafenstraße 38), 10117 Berlin
Registration is required and possible here: Registration Eva Luise Köhler Research Award
Program - Saturday, June 10, 2023
| 8:30 | Registration and coffee | |
| 9:00 | From Exome to Genome and beyond in rare diseases | Prof. Dr. Ana Pombo, Max-Delbrück-Centrum für Molekulare Medizin (Presentation language: English) |
| 9:30 | genomDE - Upswing for Genomic Medicine in Germany? | Sebastian C. Semler, Technologie- und Methodenplattform für die vernetzte medizinische Forschung e.V. |
| 10:00 | Prevention and the role of medical systems biology in rare diseases | Prof. Dr. Nikolaus Rajewsky, Berlin Institute for Medical Systems Biology |
| 10:30 | 20 Years National Registry for Congenital Heart Defects - Status and Prospects | Prof. Dr. Felix Berger, Charité Universitätsmedizin Berlin |
| 11:00 | Coffee break | |
| 11:20 | Transition as the key to empowerment in living with a rare disease | Dr. Nora Matar, Centrum für Seltene Erkrankungen Ruhr |
| 11:40 | Care gaps from the patients' perspective | Geske Wehr, Allianz Chronischer Seltener Erkrankungen ACHSE e.V. |
| 12:00 | Crisis prevention: What can and do we have to learn for rare diseases from the pandemic? | Prof. Dr. Laura Inhestern, Universitätsklinikum Hamburg-Eppendorf |
| 12:30 | ROUNDTABLE Digitization, Artificial Intelligence and Prevention - a Perfect Combination? | Prof. Dr. Sylvia Thun, Berlin Institute of Health; Bernd Rosenbichler, Alstroem Initiative; Prof. Dr. Martin Mücke, RWTH Aachen; Moderation: Prof. Dr. Helge Hebestreit, Universitätsklinikum Würzburg |
| 13:15 | Farewell | Eva Luise Köhler |
| Lunch and departure |
Supported by:
Pfizer Pharma GmbH, Takeda Pharma Vertrieb GmbH & Co. KG, KARL STORZ SE & Co. KG, Sanofi-Aventis Deutschland GmbH, PTC Therapeutics Germany GmbH, Alexion Pharma Germany GmbH und Chiesi GmbH.
