Banner Rare Disease Symposium 2023
Register now

7. Rare Disease Symposium: Early Detection and Treatment - The Role of Prevention in Rare Diseases

Registration 7th Rare Disease Symposium

Program flyer (German)

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
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)

10:30Start registration and coffee 
11:00WelcomeEva Luise Köhler
11:05Preventive care of the future - thinking in social spaces, linking social and health care systemsProf. Dr. Freia de Bock, Universitätsklinikum Düsseldorf
11:30Research on prevention enables life and quality of life for people with rare diseases Prof. Dr. Annette Grüters-Kieslich, Eva Luise und Horst Köhler Stiftung
12:00The (success) story of newborn screeningProf. Dr. Georg Hoffmann, Universitätsklinikum Heidelberg
12:20Fr1da - Detect type 1 diabetes early and treat it well early onProf. Dr. Anette-Gabriele Ziegler, Helmholtz Zentrum München 
12:40Assured success story: Neonatal Screening for Congenital HypothyroidismDr. Oliver Blankenstein, Charité Universitätsmedizin Berlin
13:00Success story in the making: Screening for Sickle Cell DiseaseDr. Stephan Lobitz, Gemeinschaftsklinikum Mittelrhein
13:15Lunch Break 
14:00Key note lecture: The Future of Newborn Screening is starting nowDr. Stephen F. Kingsmore
Rady Children's Hospital, San Diego 
(Presentation language: English)
14:30Genetic Screening in Israel – an overviewProf. Ohad Birk, Leiter des National Knowledge Center for Rare/ Orphan Diseases Israel
(Presentation language: English)
15:00Panel 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

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

8:30Registration and coffee 
9:00From Exome to Genome and beyond in rare diseasesProf. Dr. Ana Pombo, Max-Delbrück-Centrum für Molekulare Medizin
(Presentation language: English)
9:30genomDE - Upswing for Genomic Medicine in Germany?Sebastian C. Semler, Technologie- und Methodenplattform für die vernetzte medizinische Forschung e.V.
10:00Prevention and the Role of Medical Systems Biology in Rare DiseasesProf. Dr. Nikolaus Rajewsky, Berlin Institute for Medical Systems Biology
(Presentation language: English)
10:3020 Years National Registry for Congenital Heart Defects - Status and ProspectsProf. Dr. Felix Berger, Charité Universitätsmedizin Berlin
11:00Coffee break 
11:20Transition as the key to empowerment in living with a rare disease Dr. Nora Matar, Centrum für Seltene Erkrankungen Ruhr
11:40Care gaps from the patients' perspectiveGeske Wehr, Allianz Chronischer Seltener Erkrankungen ACHSE e.V.
12:00Crisis prevention: What can and do we have to learn for rare diseases from the pandemic?Prof. Dr. Laura Inhestern, Universitätsklinikum Hamburg-Eppendorf
12:30ROUNDTABLE 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
13:15FarewellEva 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.

hello world!
Newsletter subscription
Our free newsletter informs you about current calls for proposals, events and projects on rare diseases.
linkedin facebook pinterest youtube rss twitter instagram facebook-blank rss-blank linkedin-blank pinterest youtube twitter instagram