OP0287 PARE SETTING UP A EUROPEAN FEDERATION OF SJÖGREN’S SYNDROME PATIENT ASSOCIATIONS: HOW WE BUILT UP SJÖGREN EUROPE IN LESS THAN ONE YEAR
Authors: Alice Grosjean, Ana Vieira, Coralie Bouillot, Jenny Inga Díaz, Mascha Oosterbaan, Joyce Koelewijn-Tukker, Isabelle Lesuisse
Journal: Annals of the Rheumatic Diseases (2019)

<h3>Background</h3> Despite its considerable prevalence among CTDs, SS has been devoted less research, interest, time and effort compared with other close conditions. Active and synergistic involvement of patients, clinicians and scientists in the definition of unmet needs and areas of future research is crucial. <h3>Objectives</h3> To set up a perennial European Federation of SS patient associations to address the lack of visibility and the unmet needs, foster patient training and involvement in research and articulate patient voices throughout Europe. <h3>Methods</h3> Sjögren Europe was conceived during the 2018 ISSS and the decision to materialize the Federation was launched during the EULAR 2018 congress, where several meetings with key entities representatives were organized to get advice on various aspects. A medical advisory board was also set up. By-laws, a logo and a website were created. The task force is composed of patients already involved in patient advocacy at a national and international level. The first step was to set a mindset and to communicate on a regular basis to ensure a common spirit. We set priorities and down-to-earth objectives and focus on them. Although there is a leader for supervision and to take final decisions, the governance is mainly based on shared leadership sustained by trusted connections. Personal initiatives are encouraged, and failure is considered as a learning experience. We build a culture of compromise. As members experience debilitating fatigue, they achieve the tasks they can, whenever they have time and energy, and report them to the others: Sjögren Europe adapts to its members. We also welcome anyone sharing our mission principles and wanting to be involved in the project. <h3>Results</h3> On the 23<sup>rd</sup> of February 2019, Sjögren Europe was officially set up with more than 8 countries as founders. Being flexible not only allows patients with debilitating fatigue to work for the federation but also leads to lean and efficient procedures and tasks. An enthusiastic and supportive environment makes the commitment sustainable and meaningful. Face to face meetings, a good network and collaboration are imperative. The way we respond to mistakes is also crucial for motivation. <h3>Conclusion</h3> This project empowers the SS patient community, brings hope, injects a new energy in patient advocacy and breathes motivation for collaboration to researchers, scientists and clinicians. This presentation aims to share our story and the key learning points about the way we work and to spread the positive atmosphere. <h3>Reference</h3> [1] Romão V. C., Talarico R., Scirè C. A., et al. Sjögren's syndrome: state of the art on clinical practice guidelines RMD Open 2018; 4:e000789. doi: 10.1136/rmdopen-2018-000789 <h3>Acknowledgement</h3> EURORDIS Council of Federations &amp; toolkit, HarmonicSS project, ERN ReCONNET, ISN (International Sjögren's Network), Lupus Europe, SSF (Sjögren's Syndrome Foundation) <h3>Disclosure of Interests</h3> None declared