idw – Informationsdienst Wissenschaft
Nachrichten, Termine, Experten
Nachrichten, Termine, Experten
from 8:30 a.m.
Registration and Coffee
9:00 a.m.
Welcome Address Eva Luise Köhler
9:05 a.m.
Opening Keynote „Unlocking the Secrets of Rare Diseases: How Precision Medicine is Turning Discovery into Hope“
Professor Anna Greka, Harvard Medical School, Brigham and Women’s Hospital
Session 1: Case Study Neuronale Ceroid-Lipofuszinose (NCL) – Understanding and Addressing a Rare Neurological Disorder
9:45 a.m.
NCL research: Progress and Challenges
Dr. Angela Schulz, UKE Hamburg
10:05 a.m.
Research Initiation and Networking for NCL: Strategies and Successes
Dr. Frank Stehr, NCL-Foundation
10:25 a.m.
A Family Perspective on living with NCL
Christian Thulfaut, NCL-Group Germany e.V.
10:45 a.m.
Questions and Discussion
10:55 a.m.
Coffee Break
Session 2: Unlocking the Power of Data in Rare Diseases
11:30 a.m.
Data on Rare Diseases: How to balance the Necessity of Sharing and Privacy?
Prof. Dr. Louisa Specht-Riemenschneider, Federal Commissioner for Data Protection and Freedom of Information
12:00 p.m.
The European Rare Diseases Research Alliance (ERDERA) – a unique opportunity to consolidate RD research ecosystem in EU and beyond
Dr. Daria Julkowska, European Joint Programme on Rare Diseases
12.20 p.m.
UNRARE ME – Establishing New Joint Paths for Patients and Health Care Professionals Prof. Dr. Lorenz Grigull, University Hospital Bonn (UKB)
12.40 p.m.
SATURN — Smart Doctor Portal for Patients with Unclear Diseases
Dr. Andreas Jedlitschka, Fraunhofer Institute for Experimental Software Engineering IESE
1.00 p.m.
Questions and Discussion
Lunch Break
Session 3: Spotlight Talks: Cutting-Edge Developments – Recognizing, Understanding and Treating Rare Diseases
2:15 p.m.
Introduction
Prof. Dr. Annette Grüters-Kieslich, Eva Luise and Horst Köhler Foundation
2.25 p.m.
Next-Generation Genomics – A Cornerstone in Rare Disease Diagnostics
Prof. Dr. Malte Spielmann, University Hospital Schleswig-Holstein (UKSH)
2.40 p.m.
Molecular Pathways: Unveiling the Mechanisms of Rare Diseases
Prof. Mehul Dattani, Great Ormond Street Hospital for Children (GOSH) London
2.55 p.m.
Redefining Treatment: Innovations in Gene and Cell Therapies
Prof. Dr. Hildegard Büning, Hannover Medical School
3.10 p.m.
Privacy-preserving Multi-center AI – A Prerequisite for Rare Disease Research
Prof. Dr. Jan Baumbach, UKE Hamburg
3.25 p.m.
Summary, Questions and Discussion
Coffee Break
Session 4: Looking ahead: Visions and Advances for Tomorrow’s Healthcare of Rare Diseases
4:10 p.m.
Precision Medicine: Opportunity or Risk for Vulnerable Groups Prof. Dr. Claudia Bozzaro, University of Münster
Closing Discussion
4:55 p.m.
Farewell
Prof. Dr. Annette Grüters-Kieslich, Eva Luise and Horst Köhler Foundation
—————————————————–
Information on participating / attending:
Die Teilnahme ist kostenfrei nach Anmeldung unter www.elhks.de/rds2025/anmeldung
Die Berliner Ärztekammer gewährt 7 CME-Punkte.
Veranstaltungssprache ist Englisch.
Date:
06/20/2025 09:00 - 06/20/2025 17:00
Registration deadline:
06/09/2025
Event venue:
KARL STORZ SE & Co. KG Besucher- und Schulungszentrum Berlin
Scharnhorststraße 3
10115 Berlin
Berlin
Germany
Target group:
Scientists and scholars, all interested persons
Email address:
Relevance:
transregional, national
Subject areas:
Medicine
Types of events:
Conference / symposium / (annual) conference
Entry:
04/03/2025
Sender/author:
Eva Thull
Department:
Presse- und Öffentlichkeitsarbeit
Event is free:
yes
Language of the text:
German
URL of this event: http://idw-online.de/en/event79037
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