Progress does not happen only in laboratories or meeting rooms.
From Patient Perspective to Scientific Progress
How can we ensure that patients’ voices genuinely become part of the development of research and new treatments? This question was at the heart of the EURORDIS Open Academy School on Scientific Innovation & Translational Research (SITR), which our founder Cindy Wan attended in Barcelona for four days. She returned with new knowledge, valuable connections and, above all, a stronger conviction that patients are becoming increasingly important partners in the development of future research.
Throughout the week, participants explored a wide range of topics, including genomics, patient-generated data, rare disease registries, translational research, advanced therapies and the ethical questions that come with scientific innovation.
Some of the most valuable moments came from the conversations between sessions. Cindy Wan spoke with Daniel Lewi about what meaningful patient representation really means. It is not simply about having a voice, but about making sure that the wider patient community is heard and can genuinely contribute to research and innovation.
Another valuable conversation was with Elliot Lilley , focusing on a question that matters deeply to many patients: how can we make sure that scientific discoveries ultimately lead to treatments that reach the people who need them?
These conversations will continue. Cindy Wan is also looking forward to a follow-up conversation with Prof. Annemieke Aartsma-Rus, this time over a coffee closer to home in the Netherlands.
One of the highlights of the week was a visit to the Centre for Genomic Regulation (CRG) and the Centro Nacional de Análisis Genómico (CNAG).. The visit offered a clear insight into how fundamental scientific research can lay the groundwork for future clinical applications.
The main lesson Cindy Wan takes home from Barcelona is that progress does not happen only in laboratories or meeting rooms. Bringing researchers, healthcare professionals and patients together makes it possible to connect knowledge and experience from different perspectives.
This is also what Stronger for Connective Tissue is about: strengthening the position of people living with collagen-related connective tissue disorders, so that their experiences, needs and perspectives have a place in research, healthcare and innovation.
The Open Academy was therefore more than a week of learning. It was an opportunity to deepen existing connections, make new ones and continue building a network in which patients, researchers and healthcare professionals can find and learn from one another.