My journey with patient advocacy began long before I joined the EUPATI Patient Expert Training Programme. It was shaped by lived experience — supporting my spouse through Amyotrophic lateral sclerosis (ALS) — and later strengthened through years of professional engagement in European-level dialogue, policy, and education.
EUPATI offered the missing bridge: structured knowledge that connects lived experience with science, regulation, and collaboration. The EUPATI Fellowship was far more than an educational programme. It was a transformative process that helped me better understand the full lifecycle of medicines development — from research design and clinical trials to regulatory decision-making, pharmacovigilance, and Health Technology Assessment. Most importantly, it provided the tools and language needed for patients to participate meaningfully and responsibly in these processes.
One of the most powerful moments of the programme for me was recognizing the value of constructive patient contribution within scientific and regulatory dialogue. As an ALS Patient Expert with the European Medicines Agency, I participate in CHMP-related discussions to build on existing scientific exchanges, contribute the patient perspective where relevant, and highlight the human meaning behind the data. EUPATI has given me the confidence and structure to do this effectively.
Since graduating, my advocacy work has become more focused and more collaborative. As President of the Hellenic ALS Association, I am working to strengthen patient involvement in Greece while maintaining active connections with European and international networks. The knowledge gained through EUPATI now directly informs how we engage with regulators, researchers, clinicians, and patient communities — ensuring that our contributions are evidence-informed, respectful, and constructive.
Being part of Cohort 8 — alongside patient advocates from 38 countries — reinforced the value of collective learning and mutual respect. We come from different backgrounds and disease areas, but we share a common goal: ensuring that patient voices are heard, understood, and integrated into healthcare decision-making in a meaningful way.
Looking ahead, I strongly believe in continued collaboration among EUPATI Fellows, both nationally and across borders. There is great potential in connecting our experiences, sharing initiatives, and designing joint actions that strengthen patient engagement ecosystems. I would welcome opportunities for dialogue and collaboration with fellow EUPATI graduates to explore how we can work together to turn knowledge into impact.
Graduation was not an ending — it was a powerful new beginning.
A grounded starting point for continued advocacy, built on knowledge, competence, courage, and connection.
It was an honour to represent the ALS community within EUPATI Cohort 8 and to contribute to a shared vision of informed, collaborative patient involvement across Europe.
In the words of EUPATI Fellow Aspasia Karampela – Cohort 8