Zoe Karakikla-Mitsakou
The European Alliance of Associations for Rheumatology (EULAR) Congress 2023 was incredibly interesting, full of groundbreaking research and information about lupus! EULAR 2023 was also very successful for Lupus Europe and its Patient Advisory Network (PAN) members. With unwavering dedication and hard work, PAN members showed their commitment to supporting the lupus community across Europe.
Alain Cornet Wins PARE Best Abstract Award:
Lupus Europe submitted six abstracts at EULAR Congress 2023. Five of these abstracts were accepted with two selected for oral presentation, including the acclaimed “Lupus Europe’s Patient Advisory Network – A Huge Double Success.” The main author, Alain Cornett, was honoured with the prestigious PARE Best Abstract Award.
The oral presentation was skilfully delivered by PAN member and Board member, Amy Somers.
Empowering Patients through Lupus100.org:
One of the resounding successes was the spotlight on the Lupus100 project. The abstract “Lupus100.org – A Step Change in Access to Quality Information for European Lupus Patients” was chosen for an oral presentation in the Opening Abstract Plenary Session of the scientific programme!
The oral presentation was delivered by Zoe Karakikla-Mitsakou. This acknowledgement in the scientific programme underscores the importance of the Lupus100 project in providing valid and easy to understand information about lupus in, currently, more than 80% of the native languages of the European population so lupus patients can access valid information about lupus in their own language.
The potential of Lupus100 as a tool for patients, but also for doctors was highlighted by Francesca Marchiori (PAN member), Lena Koskina (PAN member) and Alain Cornet through “Lupus100.org a new tool for doctors to build patients lupus knowledge and fight poor quality web information” in the scientific poster tour.
Exploring Crucial Aspects of Lupus:
Alain Cornet’s poster tour presentation “Patient-doctor communication gap – Results of a speed-shop on “lupus flare” at Lupus2022 meetings” highlighted the difference between physicians’ and patients’ definition of a lupus flare.
Dalila Tremaria’s (PAN member and Board Member) scientific poster presentation on the “Association between diagnosis delay and disease activity with burden of the disease in 4150 European patients with Systemic Lupus Erythematosus” put a spotlight on the association between diagnosis delay and self-perceived disease activity with the burden of the disease on the daily life of people living with lupus.
Furthermore, Jeanette Andersen (Lupus Europe Chair) shared her inspirational journey to the specialists of her rheumatic disease in a captivating fishbowl session!
The abstract “Recommendations on handling medicine shortage: learning from Hydroxychloroquine 2020 crisis for SLE patients” was also accepted for publication.
Enthusiastic Presence at the Lupus Europe Booth:
The Lupus Europe booth was a hub of energy and enthusiasm, thanks to the devoted PAN members who tirelessly manned the booth. Their passion for spreading awareness about Lupus Europe, the Lupus100 project and many other Lupus Europe projects was clear to all those who passed by.
EULAR 2023 Debrief – For People Living with Lupus” Webinar:
Lupus Europe invites you to watch the joint Lupus Europe / ERN ReCONNET webinar on “EULAR 2023 Debrief – for people living with lupus”. Watch the webinar to learn more about Lupus Europe successes at EULAR Congress 2023, hear first-hand from PAN members who took part in the Congress, but also to discover more about the ground-breaking presentations and initiatives that made EULAR 2023 an extraordinary success.
Watch the webinar at the Lupus Europe Website Library or by following this link: https://www.lupus-europe.org/videos-on-demand/#iframe-1
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