RESEARCH4RARE – YOUNG RESEARCHERS WORKSHOP ON RARE DISEASES 2025

Date: 24 – 25 March 2025 & 26 March 2025

Venue: Kardinal-Wendel-Haus, Kath. Akademie in Bayern, Munich

PROGRAMME – R4R Young Researchers Workshop on Rare Diseases 2025

The RESEARCH4RARE – YOUNG RESEARCHERS WORKSHOP ON RARE DISEASES, held from 24 – 26 March 2025 in Munich, was co-organized by Tabita Ghete and Midhuna I. Joseph Maran, together with the coordinating office to the research networks on rare diseases, Dr. Corinna Schultheis and Katja Franke-Rupp.

It was a multidisciplinary event organized by young researchers for young researchers, bringing together 30 participants from a broad spectrum of disciplines, including biosciences, medicine, and bioinformatics. Each participant had the opportunity to present their research, either during the poster session or through selected short presentations, and they were encouraged to engage directly with their peers and the senior scientists.

An introduction to the field of rare diseases was given by Prof. Dr. med. Rebecca Schüle, spokesperson of the Research for Rare board of speakers and coordinator of the TreatHSP.net research network, and Prof. Dr. med. Frank Leypoldt, coordinator of the CONNECT GENERATE research network, outlining the current state, challenges and future directions of rare disease research. This overview highlighted the importance of combining different methods and omics in order to understand the rare disease landscape.

Bioinformatics sessions were led by Dr. Vicente Yépez, who placed particular emphasis on RNA-seq-based analysis, complemented by Dr. German Demidov, who delivered an in-depth introduction to structural variants. Following the presentations, a practical workshop was held. During this workshop, the participants resolved real-life scenarios involving the identification of disease-causing variants.

Additional sessions included a lively discussion regarding ethics in research and medicine by Dr. phil. Christoph Schickhardt, and a colorful insight into the peer review process by Dr. Thomas Lemberger, covering the experiences of writing and receiving reviews. Additionally, Dr. Anandhi Iyappan showcased effective data management strategies within the context of expanding, data-driven research.

The participants had the opportunity to ask the senior scientists anonymous questions during a panel, which led to a productive discussion regarding strategies for coping with academic pressure and achieving a healthy work-life balance.

An additional day for 12 participants featured a full-day workshop on scientific writing given by Dr. phil. Aniko Balazs, focusing on abstract writing and techniques for overcoming writer’s block.

The workshop was a memorable event that fostered collaboration and the exchange of ideas across diverse scientific backgrounds. For additional information, please refer also to the workshop programme.

The coordinating office to the research networks on rare diseases aims to offer a further scientific writing workshop for young researchers in April 2026, linked to the International Symposium “The Translational Science of Rare Diseases – From Rare to Care V “, 22 – 24 April 2026.

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