ELEANA
The Hellenic League Against Rheumatism (ELEANA) became a member of ASIF in 2022 and participated in its Council Meeting for the first time in Copenhagen. At that time, when asked to present axSpA-related activities to fellow ASIF members, we had little to report beyond our annual participation in World AS Day. This accurately reflected the broader reality in Greece—axSpA was not receiving sufficient attention from the research community, policymakers, or public awareness campaigns, and delays in diagnosis were still quite high.
Since then, ELEANA has made significant progress. We joined impactful global initiatives, such as ASIFs “TalkToBeHeard” campaign, which sparked meaningful conversations—both online (as pictured) and in person—among patients and the broader community. These were conversations that, until then, had never taken place in Greece.
Building on that momentum, we also embraced the “It’s All Connected” campaign, using its resources to secure funding for further impactful activities. We took our involvement a step further by organising webinars that brought together healthcare professionals and patients with lived experience, fostering deeper understanding of how everything is indeed connected in axSpA care and awareness.
Being able to use the IMAS survey reports provided us with a wealth of both specific and general data about axSpA. This has strengthened our advocacy efforts, allowing us to
represent patients’ voices more effectively in high-level meetings with policymakers and at conferences, where we present the patient perspective within both the European and global context.
Over the past few years, ELEANA has been empowered through its participation in ASIF and the new collaborations born from the Council Meetings in Copenhagen and Bogotá. We have gained valuable insights into axSpA developments across Europe and globally, exchanged knowledge and best practices, and adapted available tools and resources to suit the Greek context. As a result, we are now raising awareness more effectively, advocating more strategically, and standing as stronger, more equal partners within both the patient and research communities.
This year’s World AS Day 2025 campaign, themed #LaceUpForAxSpA and #EverydayChallenges, was particularly impactful and successful, especially in terms of social media engagement. Patients actively participated by sharing their personal stories, creating a wave of visibility and connection across platforms. Our members showed great creativity and enthusiasm in using their orange laces, making the campaign both meaningful and memorable. The initiative is still ongoing in Greece, and we’ve been very encouraged by the strong response and the active involvement of patients and their caregivers in raising awareness for axSpA.
Looking back on our first year of participation in ASIF, we can now proudly say that we are truly part of a global community. We’ve gained visibility, found a strong network to rely on, and created a space where we can share our stories, draw strength and inspiration from one another, and grow together. Being part of this community has empowered us—and continues to do so—as we work to make a meaningful difference for people living with axSpA.
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