“Patients are not only beneficiaries of research and innovation, they are important partners in shaping them.”
As part of our Team Spotlight series, we’re introducing Ja sam 1 od 10 (I Am 1 in 10), a Croatian patient organisation created by those living with endometriosis.
Tell us more about your organisation.
The idea behind our association came from personal experience and a shared belief that those affected by this disease deserve more understanding, better support, and earlier access to diagnosis and treatment. Today, we work to raise awareness, advocate for patients’ rights, support individuals and families affected by endometriosis, and help ensure that patients’ voices are heard in healthcare and society.
What is your role in the EUmetriosis project?
As a patient organisation, our role is to bring the patient perspective into the EUmetriosis project. We help ensure that the experiences, challenges, and priorities of those living with endometriosis are reflected throughout the project. We also contribute to outreach and awareness activities and help connect the project’s work with the wider patient community.
What excites you about the project?
What excites us most is the opportunity to be part of a European initiative that recognises the importance of collaboration. For many years, those living with endometriosis have faced delays in diagnosis, limited awareness, and significant challenges in accessing appropriate care. Seeing researchers, healthcare professionals, and patient advocates working together towards common goals is both encouraging and inspiring. We believe that this kind of partnership is essential for creating meaningful and lasting change.
Why is patient organisation involvement so important?
Patient organisations provide a perspective that comes directly from lived experience. We understand the realities of navigating symptoms, seeking answers, and coping with the impact that endometriosis can have on every aspect of daily life. By involving patient organisations, projects such as EUmetriosis become more patient-centred and more closely aligned with real-world needs. Patients are not only beneficiaries of research and innovation, they are important partners in shaping them.
Is there anything else you’d like to add or share with those following the EUmetriosis project?
We would like to thank everyone who is supporting and following the EUmetriosis project. Endometriosis has been overlooked for far too long, but together we have an opportunity to change that. By sharing knowledge, listening to patients, and working across disciplines and countries, we can help build a future where endometriosis is recognised earlier, understood better, and managed more effectively. We are proud to contribute to this effort and look forward to the positive impact it can have on the lives of patients across Europe.
We believe that the real progress happens when patients, healthcare professionals, researchers, and policymakers work together. We are proud to be part of that journey through EUmetriosis and excited about what we can achieve together.