Adlane Soudani | Global Asset Lead Rare Disease
Ipsen

Day 1 - Tuesday 28 October @ 11:30

Working Group 1: From Insight to Action: Leveraging Patient Experience Data Across the Rare Disease Lifecycle

Understanding patient experiences, preferences, and behaviours is critical to developing treatments that truly meet patient needs. Yet in rare diseases, capturing and applying these insights remains difficult due to small, diverse populations, delayed diagnoses, a lack of standardized methods, and limited regulatory guidance. 

This panel will explore how both qualitative, and semi-quantitative patient data can inform more effective, patient-centred decisions across the product lifecycle in the rare disease space. Experts will address key barriers, such as data integration, resource constraints, and methodological gaps, and share practical strategies and real-world examples to overcome them. 

Join the panel and gain a clear view of what meaningful patient experience data look like and how they can drive clinical development strategies, as well as pre-launch and market success

Giulia Pierini, Partner, Strategic Patient Engagement & Advocacy, Alira Health

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Giulia Pierini / Working Group 1: From Insight to Action: Leveraging Patient Experience Data Across the Rare Disease Lifecycle

Giulia Pierini, Partner, Strategic Patient Engagement & Advocacy,
Alira Health

Giulia Pierini is a rare disease specialist with deep expertise in patient engagement and advocacy. With over five years dedicated to the rare disease field and more than 50 successful patient-focused projects across multiple rare and complex conditions, she has collaborated with global...

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Session led by: Alira Health

Enrico Piccinini, Senior Vice President, EU & International, Rare Diseases, Chiesi Group

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Enrico Piccinini / Working Group 1: From Insight to Action: Leveraging Patient Experience Data Across the Rare Disease Lifecycle

Enrico Piccinini, Senior Vice President, EU & International, Rare Diseases,
Chiesi Group

Enrico Piccinini has been Senior Vice President, EU & International, Rare Diseases, Chiesi Group, since November 2019, where he leads a team that works to make treatments available for rare and ultra-rare diseases. He is a member of various biotech, R&D and orphan drug groups and...

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Giulia Colombo, Global Director Payer Partnership, CSL

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Giulia Colombo / Working Group 1: From Insight to Action: Leveraging Patient Experience Data Across the Rare Disease Lifecycle

Giulia Colombo, Global Director Payer Partnership,
CSL

Giulia Colombo is a healthcare policy and market access leader with extensive experience at the intersection of payer relations, global advocacy, and public affairs. She currently serves as Global Director of Payer Policy & Partnership at CSL, where she drives strategic initiatives to shape...

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Adlane Soudani, Global Asset Lead Rare Disease, Ipsen

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Adlane Soudani / Working Group 1: From Insight to Action: Leveraging Patient Experience Data Across the Rare Disease Lifecycle

Adlane Soudani, Global Asset Lead Rare Disease,
Ipsen

Adlane Soudani is Global Asset Lead at IPSEN. Adlane has 20+ years of international leadership in the pharmaceutical industry with extensive experience in the rare disease space. Over the years, Adlane has led strategic initiatives across multiple therapeutic areas, global launches, asset...

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