Patients Must Be Part of the Journey: Our 2nd Join4ATMP Webinar Explored How to Strengthen Patient Engagement in ATMP Development

On 15 June 2026, the Join4ATMP project brought together around 40 participants, including patients, patient representatives, researchers, clinicians, developers and other stakeholders for its second webinar on patient engagement in Advanced Therapy Medicinal Product (ATMP) development.

The webinar focused on one key question: How can patients be meaningfully involved throughout the entire ATMP development journey?
It aimed to develop a shared understanding of how patients and patient representatives can be meaningfully involved throughout ATMP development and the broader ATMP ecosystem, while refining the Join4ATMP roadmap and recommendations to promote stronger patient-centred approaches and sustainable patient engagement.

ATMPs, including gene therapies, cell therapies and tissue-engineered products, have the potential to transform the lives of people living with serious and often rare diseases. However, developing these therapies remains complex, costly and challenging. Ensuring that they address real patient needs requires patients to be involved not only as trial participants, but as active partners throughout the development process.

Building on Evidence and Experience

This webinar built on several previous activities within the Join4ATMP project, including the results of a large multi-stakeholder survey, insights gathered during the first webinar, and the development of a first draft of the Join4ATMP Roadmap for Patient Engagement in ATMP Development. The session provided an opportunity for participants to review, discuss and refine the draft recommendations, focusing on the identification of practical actions, implementation priorities and good practices that can help strengthen patient-centred approaches and support meaningful, structured and sustainable patient engagement throughout the ATMP lifecycle.

Four Key Gaps Identified

• The first gap relates to the timing of engagement. Patient involvement still tends to occur relatively late in the development process, often during clinical trials, rather than during the earlier stages when research priorities and development strategies are being defined.
• The second gap concerns the level of partnership and co-creation. While patients are increasingly consulted, they are not always engaged as equal partners in the design of clinical trials and the planning of post-trial pathways.
• The third gap relates to the broader environment supporting patient engagement. Many stakeholders highlighted the lack of structured frameworks, clear processes, and sustainable mechanisms that would allow patient engagement to become routine rather than ad hoc.
• And finally, the fourth gap focuses on communication, capacity building and implementation challenges. Complex ATMP concepts, limited training opportunities, insufficient resources, and competing priorities continue to create barriers for both patients and professionals.

These four gaps formed the foundation of a first draft of the Join4ATMP Roadmap and were translated into four corresponding pillars and sets of recommendations.

Interactive Discussions to Refine the Roadmap

To further validate and refine these recommendations, participants took part in interactive breakout discussions focusing on three key themes: early involvement and co-design, patient-centred clinical trial design, and structured engagement, capacity building and sustainable implementation. Across these sessions, participants exchanged experiences, identified examples of good practice, discussed practical actions and implementation priorities, and explored how different stakeholders can work together to embed meaningful patient engagement across the ATMP ecosystem.

Looking Ahead

The Join4ATMP Roadmap for Patient Engagement in ATMP Development is currently being finalised through this collaborative, multi-stakeholder process. The final roadmap will be published and shared widely to support more patient-centred approaches across ATMP research, development, regulation and access.

As highlighted during the webinar:"ATMP development is a shared journey. Some decide the destination. Some build the train. Some buy the tickets. Some set the rules. But patients are the ones travelling. Meaningful patient engagement means planning the journey with patients from the start."

The webinar reinforced a growing consensus across the ATMP community: meaningful patient engagement is not an optional add-on; it is essential for developing therapies that truly meet patient needs and improve lives.