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

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

Mathieu Boudes, Senior Advisor, FIPRA

Vinciane Pirard, Medical - SAI, 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:

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

Mathieu Boudes, Senior Advisor, FIPRA

Vinciane Pirard, Medical - SAI, Sanofi

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

×

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...

CloseMore

Kit Roes, Professor, Radboudumc

×

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...

Close

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

×

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:

Day 2 - Wednesday 29 October @ 15:00

Keynote Panel: In what way can we mobilise, enable and leverage international policies around the world for PLWRDs?

-What progress has been made from WHO Resolution on Rare Diseases?

-How far are we from a Global Action Plan on Rare Diseases?

Moderator: Yann Le Cam, Founder & Past-CEO of EURORDIS-Rare Disease Europe, EURORDIS-Rare Diseases Europe

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

Nadiah Hanim Abdul Latif, President, Malaysian Rare Disorders Society

Diego Fernando Gil Cardozo, President, Enfermedades Raras en el Caribe y América Latina (ERCAL)

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Diego Fernando Gil Cardozo / Keynote Panel: In what way can we mobilise, enable and leverage international policies around the world for PLWRDs?

Diego Fernando Gil Cardozo, President,
Enfermedades Raras en el Caribe y América Latina (ERCAL)

Diego is the Executive Director of the Federación Colombiana de Enfermedades Raras (FECOER), an umbrella organisation bringing together 52 patient groups to represent the voice of the rare disease community in Colombia. Diagnosed with pulmonary hypertension over 30 years ago, Diego used his...

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