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The European Lupus Meeting is a scientific congress focusing on clinical practice and lupus research in Europe, that takes place every other year. This year it will take place in Venice from October 5th – 8th. Between 500-700 people, with the majority being doctors from the rheumatology or immunology fields, but also various other specialties, will attend to get updated on what is happening in lupus.  Some people from industry and a few patients, among others, will also participate.
Earlier this year LUPUS EUROPE called all members and our online community to encourage the submission of abstracts with a patient perspective for the scientific review at the European Lupus Meeting 2016.
We received 6 eligible abstracts – and all 6 were accepted! Two for oral presentation in the programme and four for poster viewing during different sessions. This is a fantastic success rate and we congratulate everyone for their hard work:
Marina Falanga will present on THE ITALIAN SLE SURVEY BY WEB: INVESTIGATING PATIENTS’ UNMET NEEDS AND IMPROVING CARE SYSTEM THROUGH VIABLE ONLINE SURVEY TOOLS October 7th, Perla Room, at 12.10-12.20.
Davide Mazzoni will be giving his oral presentation of SOCIAL SUPPORT AND QUALITY OF LIFE IN SLE on October 8th, Casino Room 12.10-12.20.
Elena Forgione will present her poster Sociocultural context; Mind-Body; Doctor-patient relationship on the 7th, during the morning poster viewing session.
Amaia Dominquez will present her poster SYSTEMIC LUPUS ERYTHEMATOSUS; HEALTH-RELATED QUALITY OF LIFE (HRQOL); PAIN, also on October 7th, in the afternoon poster viewing session.
On behalf of Blanca Rubio, Kirsten Lerstrøm will present Capabilities of European lupus groups; Members of LUPUS EUROPE, also during the October 7th afternoon poster viewing session.
Patients are admitted without a registration fee which is a fantastic acknowledgement of the situation of the patients themselves as well as the groups they could represent. None have any funds to pay the rather substantial admission fee, when on sick leave or working on a voluntary basis. This year a small group of patient representatives has registered and, further to the above mentioned, a good group from Italy will be there, together with a couple from the UK, Denmark, Lithuania and France.
We are really looking forward to the four days of the European Lupus Meeting 2016!

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🧠 As lupus specialist Prof Laurent Arnaud clearly states, “Your experience of brain fog is real. It is common. It deserves attention.”

That is why the Lupus Brain Fog Severity Scale (LBFSS) was developed: to provide a lupus-specific way to assess the severity and impact of brain fog and related cognitive symptoms.

Importantly, people living with lupus were not simply asked to approve a finished questionnaire. Their own descriptions of brain fog were the starting point for its development.

🎥 Watch Prof Laurent Arnaud and our Chair, Jeanette Andersen, explain how people living with lupus helped shape the #LBFSS from the very beginning.

🦋 Lupus Europe is proud to have contributed to this international work and to have supported meaningful patient involvement throughout the development process.

📖 Read the study:
lupus.bmj.com/content/13/2/e002148
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➡️ Follow Sjögren Europe to know more.
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‼️Today is #Worl

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For many people living with lupus, it affects everyday life, yet it has often remained difficult to measure.

✅ The new Lupus Brain Fog Severity Scale (LBFSS) is the first questionnaire designed specifically to assess brain fog in lupus.

🦋 Lupus Europe is proud to have contributed to its development through meaningful involvement of people living with lupus. It's another example of how patient perspectives help shape better research and better tools.

🎥 Watch Prof Laurent Arnaud and our Chair, Jeanette Andersen, explain why the LBFSS is such an important step forward in lupus care.

lupus.bmj.com/content/lupusscimed/13/2/e002148.full.pdf
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🤔 But… how much do we really know about SLE?
Do we know as much as we think we do?

𝐓𝐫𝐲 #𝐒𝐋𝐀𝐊𝐄 𝐚𝐧𝐝 𝐟𝐢𝐧𝐝 𝐨𝐮𝐭❗

🎯 SLAKE (Systemic Lupus Assessment score for Essential Knowledge) is a quick and easy online tool designed for people living with lupus to test their knowledge and learn more about the disease.

📝 44 questions, randomly selected from a pool of 394
⏱️ Around 15 minutes to complete
🌍 Available in 20 languages
📊 A score for each lupus domain and an overall knowledge score

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SLAKE has been made possible thanks to the leadership of Prof Laurent Arnaud and Dr Antonin Satrin, and the collaboration of an international team of lupus experts and patient representatives.

🥰 Lupus Europe has proudly contributed to this project since the very beginning, and we encourage people living with lupus worldwide to take part while the study remains open.

🔗 Complete SLAKE today and let us know what you think!

lupusresearch.limequery.org/775349
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LUPUS EUROPE Uniting people with Lupus throughout Europe
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