Marco Nievo | Chief Scientific Officer
The Childrens Tumor Foundation

Pre-congress workshops @ 11:30

ERDERA: AI for Rare Diseases: From Promise to Practice

Artificial intelligence is rapidly becoming an integral part of the rare disease ecosystem, supporting scientific discovery, therapeutic development and strategic decision-making. Yet, beyond the headlines, important questions remain: where does AI genuinely create value, where does it still fall short, and how can it best complement, not replace, human expertise?

This interactive workshop will bring together leaders from research, biotech, pharmaceutical industry, investment and the patient community to explore how AI is already transforming rare disease innovation. Through real-world examples and multidisciplinary discussions, participants will examine both the opportunities and the practical limitations of AI, and discuss how human intelligence and artificial intelligence can work together to accelerate the development of therapies for rare diseases.

Moderator: Daria Julkowska, Head of Strategy & Partnerships in Health, ERDERA - INSERM

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Daria Julkowska / ERDERA: AI for Rare Diseases: From Promise to Practice

Daria Julkowska, Head of Strategy & Partnerships in Health,
ERDERA - INSERM

  Daria Julkowska holds a PhD in molecular biology and completed postdoctoral research in cellular biology at Institut Pasteur (Paris). She also holds an MSc in Research Management (Paris Dauphine) and has extensive training in EU research policy and communication. Active in the rare disease field ...

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Diana Kwast-Hoekstra, MScN.RN., Patient Expert & President, (Un)limited Forward! Foundation and PhD Candidate (UMCG), Foundation (Un)limited Forward/UMCG

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Diana Kwast-Hoekstra, MScN.RN. / ERDERA: AI for Rare Diseases: From Promise to Practice

Diana Kwast-Hoekstra, MScN.RN., Patient Expert & President, (Un)limited Forward! Foundation and PhD Candidate (UMCG),
Foundation (Un)limited Forward/UMCG

Diana Kwast-Hoekstra, MScN RN, is Founder and President of Stichting (On)beperkt Vooruit! / (Un)limited Forward! Foundation and a PhD Candidate at the University Medical Center Groningen in the Netherlands. She is a patient expert with lived experience, nurse scientist and international patient...

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Eleni Mina, Senior Researcher, Bioinformatics, ERDERA

Marco Nievo, Chief Scientific Officer, The Childrens Tumor Foundation

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Marco Nievo / ERDERA: AI for Rare Diseases: From Promise to Practice

Marco Nievo, Chief Scientific Officer,
The Childrens Tumor Foundation

Marco Nievo serves as Chief Scientific Officer at the Children’s Tumor Foundation Europe , where he leads scientific strategy and advances research initiatives aimed at improving outcomes for people living with neurofibromatosis (NF). His work focuses on drug hunting.  

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Bruno Sarfati, CEO, Tekkare

Nicolas Garcelon, Head of Data Science, Imagine Institute

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Nicolas Garcelon / ERDERA: AI for Rare Diseases: From Promise to Practice

Nicolas Garcelon, Head of Data Science,
Imagine Institute

Nicolas Garcelon has an engineer degree in agronomy (2000) and a PhD in public health medical informatics(2017). He has been working in the medical field for 25 years. From 2001 to 2012, he worked in the medical information department of Rennes University Hospital. Since 2012, he directs the data...

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Zahra Zabihin, Data Scientist, Oddifact

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Zahra Zabihin / ERDERA: AI for Rare Diseases: From Promise to Practice

Zahra Zabihin, Data Scientist,
Oddifact

Zahra Zabihin is a Data Scientist and AI Engineer at ODDIFACT, where she designs and builds AI systems for rare disease drug development. Her work includes multi-agent AI pipelines, human-in-the-loop systems in which medical and regulatory specialists validate every output, and retrieval-augmented...

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İlkay Başak UYSAL, Senior Project Manager, INSERM

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İlkay Başak UYSAL / ERDERA: AI for Rare Diseases: From Promise to Practice

İlkay Başak UYSAL, Senior Project Manager,
INSERM

Başak Uysal (Dr, PhD) is Project Manager of the Data Service Hub within the European Rare Diseases Research Alliance (ERDERA) coordination team, where she works at the intersection of rare disease research, data infrastructures and collaborative innovation. With a background in molecular...

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