@lupuseurope.bsky.social💃 That’s a wrap on the 2026 Lupus Europe Convention! 🦋 Three days of learning, sharing, practical ideas and plenty of laughter. Thank you to everyone who made Barcelona so special. 🇷🇸 Next stop: Belgrade for the 2027 #LupusConvention!
@lupuseurope.bsky.social🔴Where we live, available resources & our ability to access and understand health information can affect lupus care & outcomes.
Health literacy is more than “patient education”.
#EasyLupus & Consultation Cards help make information easier to understand & use.
@lupuseurope.bsky.social💬 Health literacy challenges can build up: too much info, conflicting advice, language barriers, changing doctors & difficulty expressing needs or taking part in shared decisions.
Mark Bakker stresses that these needs can also go unnoticed by professionals.
@lupuseurope.bsky.social🩺 Meet the Doctor at #LupusConvention gives delegates the chance to bring questions and concerns from their communities directly to a lupus specialist.
Today, Prof Cervera is sharing practical knowledge on lupus mechanisms, manifestations & wider issues relevant to daily life
@lupuseurope.bsky.social🚀Workshops are a central part of every #LupusConvention. ✅Together, we listen to the needs and resources of our members' communities, explore what we can control or influence, and define concrete, realistic actions that Lupus Europe and its community can take forward together
@lupuseurope.bsky.social🦋 Young people with lupus face challenges that go beyond treatment itself. At #LupusConvention, Rita Vieira from our Youth Group is bringing the youth perspective into focus, from transition to adult care and adherence to side effects, fertility and family planning.
@lupuseurope.bsky.social💬 What happens beyond the doctor’s office matters too.
🦋 Andrea from Spain shares @felupus Youth Encounter project: a safe, judgement-free space where young people can talk about treatment fatigue, daily life and support each other.
@lupuseurope.bsky.social📖 Jona from Iceland shares the book Maria & Mom’s Secret, a story about 8yo Maria and the special bond she shares with her mum, where everyday moments become imaginative adventures together. ✨ Another example of the creativity and ideas our members bring to #LupusConvention.
@lupuseurope.bsky.social💡 Our Chair, @Jeanette_Lupus, is showing how organisations can make practical use of #LupusGPT in their activities, from drafting social media posts and newsletters to developing ideas, adapting content and saving time on routine communication tasks.
@lupuseurope.bsky.socialAndri from Cyprus shares how they plan to use the Consultation Cards locally: distributing the Greek version, discussing them with groups in different towns and sharing them with rheumatologists.
💬 Practical tools become stronger when we share how we use them. #LupusConvention
@lupuseurope.bsky.social🗣️ Another practical tool to take home from #LupusConvention!
Our Board Member, Francesca Marchiori, presents the Lupus Consultation Cards, available in 20 languages and in female and male versions, to help people prepare for appointments.
@lupuseurope.bsky.social💡 Sharing what works helps avoid duplicating work.
At #LupusConvention, our Vice-Chair and Secretary, Annemarie Sluijmers, presents our Exercise Programme: 5 levels, developed with trained physical therapists and endorsed by EULAR.
@lupuseurope.bsky.social🧬 Prof John Isaacs is taking us from the basics of how the immune system works to why B cells matter in autoimmune RMDs, & how different approaches can target them.
The aim of precision medicine is to become increasingly selective about which cells we target. #LupusConvention
@lupuseurope.bsky.social📊 Our Vice-Chair and Secretary, Annemarie Sluijmers, is presenting the results of our Lupus Europe sunscreen survey.
🦋 Across Europe, physician advice is common, but availability, affordability and reimbursement vary. Access to sun protection matters.
@lupuseurope.bsky.social🌟 Lupus Europe is an eligible patient organisation of @ema.europa.eu, and a dedicated PAN group contributes to EMA activities.
Kaisa Immonen is now helping our members better understand how EMA works, how patients can contribute, and how they can engage more effectively.
#LupusConvention
@lupuseurope.bsky.social🟣 Lupus treatment needs 3 perspectives to meet: clinician, researcher and patient.
Alice Barinotti reminds us that the patient is not only the goal of research, but also where many of the most important questions begin.
🔗Connecting all 3 is essential. #LupusConvention
@lupuseurope.bsky.social🧐Why can lupus research take so long?
Researcher Alice Barinotti explains the challenge: lupus is a ⬆️⬆️ complex, heterogeneous disease- moving from a biological mechanism to a treatment can take 10–15 years, with only a few ideas making it through the pipeline.
#LupusConvention
@lupuseurope.bsky.social🎈 After lunch at #LupusConvention, the Lupus Europe Board keeps adding achievements to our balloon, including our upcoming Menopause & Lupus webinar.
📅 13 Oct, 19:00 CEST
👇🏻
@lupuseurope.bsky.social🎈Board Member Francesca Marchiori & PAN member Aldevina Sturiene add our latest achievements to our balloon.
🦋 One we are especially proud of: #LupusGPT published in @thelancetrheum.bsky.social
https://www.thelancet.com/journals/lanrhe/article/PIIS2665-9913(25)00370-4/abstract
@lupuseurope.bsky.social💁🏻♀️Chair of Lupus Europe’s Board, Jeanette Andersen, talks about clinical trials from the perspective of people living with lupus: the questions that arise before taking part, and why patient voice and participation are essential to advancing better treatments.
