Andrew Thomson | Consultant
Regnitio

Pre-Congress Workshops - Monday 27th October @ 14:00

Public Private Partnerships in Rare Disease: Ideas to action

This workshop will explore innovative approaches to cross-sector partnerships in the EU rare disease landscape. Participants will examine successful case studies that highlight innovative collaborations in rare disease research and diagnostics, showcasing how diverse stakeholders can work together to overcome challenges. The session will highlight partnerships that have demonstrated significant impact across the European rare disease ecosystem. By fostering knowledge exchange and promoting innovative strategies, this workshop aims to inspire and equip attendees with actionable insights to enhance multi-sector collaboration and ultimately improve outcomes for rare disease patients across Europe.

• Interdisciplinary Collaboration: Tools and Insights for Successful Rare Disease Partnerships
• IHI RealiseD - compRehensive mEthodological Approach to cLinical trIalS in (ultra-)rarE Diseases
• Newborn Screening in the EU: Historical Perspectives and Future Horizons

Moderator: Anne-Sophie Chalandon, Head of Global Public Affairs, Rare Diseases and CGT Policies, SANOFI

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Anne-Sophie Chalandon / Public Private Partnerships in Rare Disease: Ideas to action

Anne-Sophie Chalandon, Head of Global Public Affairs, Rare Diseases and CGT Policies,
SANOFI

  Anne-Sophie Chalandon works to further enhance Sanofi’s external engagement and policy shaping efforts with rare disease community. She brought a solid experience and demonstrated successes in patient advocacy and policy shaping in the rare disease space. Anne-Sophie is a major in genetic and...

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Mathieu Boudes, Senior Advisor, FIPRA

Vinciane Pirard, Medical - SAI, Chair of IRDiRC Companies Constituent Committee (CCC), Sanofi

Alicia Granados, Head, Global Rare Diseases Medical Scientific Advocacy, Sanofi

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Alicia Granados / Public Private Partnerships in Rare Disease: Ideas to action

Alicia Granados, Head, Global Rare Diseases Medical Scientific Advocacy,
Sanofi

Alicia Granados is a highly accomplished leader in the field of rare diseases, currently serving as the Head of Global Rare Diseases Medical Scientific Advocacy at Sanofi, where previously she headed its global HTA strategy .With almost 15 years of experience in the pharmaceutical industry, Alicia...

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Kit Roes, Professor, RadboudUMC

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Kit Roes / Public Private Partnerships in Rare Disease: Ideas to action

Kit Roes, Professor,
RadboudUMC

Kit Roes is Professor of Biostatistics at Radboud University Medical Center Nijmegen (Netherlands). He is chair of the Methodology Working Party of the European Medicines Agency, and senior expert at the Dutch Medicines Evaluation Board. His research focus is design and analysis of clinical trials...

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Wim Goettsch, Special Advisor HTA & Professor for HTA of Pharmaceuticals, Zorginstituut

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Wim Goettsch / Public Private Partnerships in Rare Disease: Ideas to action

Wim Goettsch, Special Advisor HTA & Professor for HTA of Pharmaceuticals,
Zorginstituut

Wim Goettsch, PhD, is Special Advisor in Health Technology Assessment (HTA) at the Dutch National Health Care Institute (ZIN). In his position at ZIN, he is a Member of the EU HTAR Coordination Group and its subgroup on Joint Scientific Consultation (JSC). Between 2010 and 2013, he was the Deputy...

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Stefaan Sansen, Scientific Director, Sanofi Genzyme

Session led by:

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Anne-Sophie Chalandon / Public Private Partnerships in Rare Disease: Ideas to action

Anne-Sophie Chalandon, Head of Global Public Affairs, Rare Diseases and CGT Policies,
SANOFI

  Anne-Sophie Chalandon works to further enhance Sanofi’s external engagement and policy shaping efforts with rare disease community. She brought a solid experience and demonstrated successes in patient advocacy and policy shaping in the rare disease space. Anne-Sophie is a major in genetic and...

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Danielle Dong, Global Medical Scientific Advocacy Lead, Rare Disease, Sanofi

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Danielle Dong / Public Private Partnerships in Rare Disease: Ideas to action

Danielle Dong, Global Medical Scientific Advocacy Lead, Rare Disease,
Sanofi

Danielle is the Global Medical Scientific Advocacy Lead, Rare Disease at Sanofi. She advocates for the understanding and use of rare disease evidence with a range of health care decision makers. She works with multistakeholder consortium across the rare disease ecosystem and leads several patient...

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Andrew Thomson, Consultant, Regnitio

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Andrew Thomson / Public Private Partnerships in Rare Disease: Ideas to action

Andrew Thomson, Consultant,
Regnitio

Andrew is the owner and lead consultant of Regnitio, a company he founded in October 2025 after a long regulatory career. He was  a statistician at the EMA for 11 years, and previously spent 7 years at MHRA, initially as a statistical assessor and subsequently Head of Epidemiology. He has a strong...

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Rita Francisco, Survey Project Manager, EURORDIS

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Rita Francisco / Public Private Partnerships in Rare Disease: Ideas to action

Rita Francisco, Survey Project Manager,
EURORDIS

Rita Francisco has a background in research, holding a BSc in Genetics and Biotechnology, an MSc in Molecular Genetics and a PhD in Biology. During her PhD, she strived to develop and implement a people-centric framework to drive biological and clinical research on a family of rare diseases known...

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