Representatives of LMNA Cardiac recently attended the Global Heart Hub Patient Networks Meeting in Amsterdam, joining patient advocates from across the cardiovascular disease community for three inspiring and productive days of learning, collaboration, and discussion.
The meeting brought together representatives from 52 patient organisations across 27 countries, alongside clinicians, policymakers, researchers, and industry partners. While healthcare systems, cultures, and challenges differ around the world, one message resonated throughout the event: patients must not only be heard—they must be active partners in shaping the decisions that affect their lives.
The programme covered a wide range of important topics, including value-based healthcare, patient-reported outcomes, health economics, health literacy, and the growing role patient organisations play in improving care and influencing healthcare policy. Discussions highlighted the importance of focusing not only on clinical outcomes, but also on the outcomes that matter most to patients and their families.
A key area of focus was the development of National Cardiovascular Disease Plans and how patient organisations can help ensure these strategies address prevention, early diagnosis, equitable access to treatment, and long-term outcomes. These conversations reinforced the value of patient advocacy in creating healthcare systems that better meet the needs of those living with cardiovascular disease.
For LMNA Cardiac, the meeting provided a valuable opportunity to connect with other patient organisations, share experiences from the rare disease community, and learn from initiatives taking place across the cardiovascular landscape. The event also highlighted the strength of collective action and the importance of building partnerships that can accelerate progress for patients worldwide.
We would like to thank the Global Heart Hub team for organising such a valuable event and for creating a platform where patient voices can contribute meaningfully to the future of cardiovascular care.
Together, we are strengthening the voice of the global cardiovascular disease patient community and ensuring that patients remain at the heart of healthcare innovation and decision-making.
