Alira Health

World Orphan Drug Congress EU

October 23 - 25, 2024 | Barcelona, Spain

We are pleased to announce that we will sponsor and speak at World Orphan Drug Congress Europe, the largest and most established orphan drug and rare disease meeting.

Luca Trentin, Senior Consultant of Patient Engagement, will moderate our working group “Enhancing Patient Involvement in HTAs: Practical Strategies for Stakeholder Collaboration” with the participation of leading experts in the field.

Make sure you join the working group and do not miss the opportunity to find us at our booth and learn how we can help develop and commercialize rare disease treatments with the intense focus on the unique needs of rare disease patients that is crucial to your success.

About Our Working Group

Enhancing Patient Involvement in HTAs: Practical Strategies for Stakeholder Collaboration

October 23 | 11:30 AM

This working group aims to encourage collaboration among stakeholders in the HTA process to improve patient outcomes through enhanced engagement strategies. We will explore key issues surrounding patient involvement in HTAs, with a focus on how pharmaceutical companies can actively contribute to this critical activity.

Key discussion areas:

  • Implications of the new HTA Regulation in the EU, effective January 2025, and how they affect patient participation
  • Best practices and ethical considerations in partnerships between pharmaceutical companies and patient advocacy organizations
  • Strategies for ensuring that patients receive clear and understandable information about pharmaceutical products during the HTA process
  • Patient training programs to enhance their participation in HTAs while maintaining ethical boundaries

If you are a stakeholder in the healthcare ecosystem, we invite you to contribute your perspectives and engage in this crucial conversation.

Speakers:

  • Luca Trentin, Senior Consultant of Patient Engagement at Alira Health
  • Cristina Montané, ACAF – Association of People Affected by Fibromyalgia and other Central Sensitization Syndromes of Catalonia, board member of the Patients ‘Council in Catalunya (CCPC)
  • Julien Delaye, Patient Engagement Manager – HTA, EURORDIS
  • Iolanda Arbiol Rodríguez, Director, Fundació Dr. Torrent-Farnell

Meet Our Speaker

Luca Trentin

Luca Trentin
Senior Consultant, Patient Engagement

Luca Trentin is a dedicated healthcare professional specializing in patient engagement and advocacy. For the last five years, Luca has focused on driving patient-focused innovation to improve healthcare outcomes. His multifaceted expertise enables him to bridge the gap between patients and healthcare providers, ensuring that patient voices are at the forefront of healthcare decision-making. His passion for patient-centered care is evident in Luca’s role as a European Patients’ Academy on Therapeutic Innovation Fellow, where he champions innovative, patient-driven healthcare solutions.

Luca holds a bachelor’s degree in physiotherapy and a master’s degree in rehabilitation sciences, as well as a degree in international healthcare management, economics, and policy. 

Meet Our Delegates

Annabel de Maria Bosch - Chief Patient Officer

Annabel de Maria
Chief Patient Officer

Ahmad Bechara

Ahmad Bechara
EVP, Global Pharma 

Nerea Blanque Catalina

Nerea Blanqué-Catalina
Managing Partner
Global Access and Pricing 

Luca Trentin

Luca Trentin
Senior Consultant,
Patient Engagement

Mathieu Rose

Mathieu Rosé
Director, Real-World Solutions

Rafael Alencar
Partner, Market Access & Pricing 

Tabatha Bourgois

Tabatha Bourgois
Director, Regulatory and Clinical Development 

Discover Our Expert Rare Disease Materials

Article

Annabel de Maria, Chief Patient Officer and Ahmad Bechara, Executive Vice President Global Pharma, discuss how engaging rare disease patients in the HTA process gives them the opportunity to have a meaningful impact on the outcome.

Learn more 

Article

This article explores the potential and challenges related to RWE in P&R decision-making for rare disease products in Spain, one of the most attractive markets in Europe because of universal healthcare.

Learn more 

Article

Patient engagement is key to successful commercialization of new drugs and medical devices across all disease areas, but it is particularly important in rare diseases where patients are often the most expert on their disease. Pharma companies agree rare disease patients’ voices are essential – but where and how to start?

Learn more

Guide

When it comes to trial sites, a patient-centric focus means considering key issues including transportation and lodging, home nursing, and budgeting. This guide explores specific opportunities for sponsors, CROs, and trial sites to develop patient-centric clinical trials for rare diseases.

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Case Study

In preparation for submitting the Phase III protocol for Myasthenia Gravis to the FDA and EMA, a multinational pharma sought support to incorporate early payer advice on the MG clinical trial design, identify evidence gaps, and provide insights on the overall development program for the asset.

Learn more  

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