In this episode, former Executive Director Anca Toma speaks with Michal Rataj, Vice President of the Polish Neuromuscular Diseases Association and member of the EPF Ethics Board, about his experience as a patient representative on the EMA’s Pharmacovigilance Risk Assessment Committee (PRAC).

Michal reflects on the responsibility and impact of bringing the patient perspective to medicines safety discussions, the importance of equal participation, and the case for voting rights for patient reps in EMA committees like CHMP.

He shares lessons from over 30 years in patient advocacy and urges communities to connect and speak with a united voice.

In this episode, Anca Toma, EPF Executive Director at the moment of the recording, speaks with Dimitrios Athanasiou, board member of the World Duchenne Organization, former EPF Board Member, and long-time patient advocate, about the critical role of patients in shaping medicines regulation at the European level.

Dimitrios shares his personal journey into advocacy, his work as a voting member of the EMA’s Paediatric Committee, and the real-world impact of involving patients in regulatory decision-making. He reflects on the challenges of ensuring meaningful participation, especially amid recent policy shifts that risk limiting patients’ voting rights within EMA committees.

We're continuing our miniseries about EDiHTA, a EU-funded project that aims to develop the first flexible, inclusive, and validated European Health Technology Assessment (HTA) framework for digital health technologies.

In this episode, we spoke with Emma Andersson, an Advocacy Specialist actively involved in the project through the Patient Advisory Group. We discussed mobile health apps and their role in revolutionising healthcare.

Find out more about the project: https://edihta-project.eu/

In this episode, we talk about the implementation of the EU Health Technology Assessment (HTA) Regulation. Join EPF in conversation with two special guests: Béla Dajka, Policy Officer at the European Commission (DG SANTE), and Valentina Strammiello, EPF Director of Strategic Initiatives. Together, they reflect on the journey to reach this moment, explore what the Regulation means for patients’ access to medicines and high-risk medical devices across Europe, and discuss how patient involvement will shape this groundbreaking initiative.

In this third episode of our special miniseries on patient involvement at the European Medicines Agency (EMA), EPF Executive Director Anca Toma speaks with Jakub Dvořáček, Deputy Minister of Health of Czechia.

In this conversation, they dive into how patients can engage at the national level to help shape health policies. They also explore how this national involvement connects with and complements patient involvement at the European level, including in EMA decision-making.

In this second episode of our special miniseries on patient involvement at the European Medicines Agency (EMA), EPF Executive Director Anca Toma speaks with MEP Stine Bosse (Renew Europe Group, Denmark).

They explore how patient voices, namely their perspectives and contributions, are essential in shaping EU health policies.

This episode was recorded in May 2025.

In this first episode of our special miniseries on patient involvement at the European Medicines Agency (EMA), EPF Executive Director Anca Toma speaks with Juan García Burgos, Head of Public and Stakeholders Engagement Department at the EMA. In this episode, they explore how patient voices are shaping medicine evaluation and healthcare innovation in Europe.

From navigating conflicts of interest to building trust through transparency and training, this conversation highlights why patient engagement is an ethical imperative.

Today, 17 April 2025, is World Haemophilia Day. This year, the European Haemophilia Consortium (EHC) is shining a light on women with haemophilia.

Despite their struggles with bleeding disorders, women remain largely invisible due to the rarity of their condition, lack of data, diagnostic challenges, and limited access to treatment and care. 

Listen to our conversation with Olivia Romero Lux, CEO of the EHC, who has been at the forefront of advocating for women with bleeding disorders for over 20 years.

More about the EHC: https://www.ehc.eu/

In this new episode, we're exploring EDiHTA, a project that aims to develop the first flexible, inclusive, and validated European Health Technology Assessment (HTA) framework for digital health technologies.

We spoke with Sheila Khawaja, a patient engagement expert actively involved in the project through the Patient Advisory Group.

Find out more about the project: https://edihta-project.eu/

In this episode, we talked with Stefania Boccia, Coordinator of PROPHET - A Personalized Prevention Roadmap for the Future Healthcare.

PROPHET is a 4-year project funded by the European Commission under the Horizon Europe Research and Innovation Programme, with the goal of developing a personalised prevention roadmap for the future healthcare. 

Visit the website: https://prophetproject.eu/

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