Zoe Karakikla-MitsakouWelcome back to our blog series on National Member News! We are excited about getting our National Member news out to the world, so more people can find out what it is happening in each country and each member organisation! We caught up with Ram Blass from Inbar who talked to us about the wonderful work the […]
Zoe Karakikla-MitsakouWelcome back to our blog series on National Member News! We are excited about getting our National Member news out to the world, so more people can find out what it is happening in each country and each member organisation! We caught up with Marga Schut and Wendy Zacouris from NVLE who talked to us about the […]
Alain CornetLUPUS EUROPE is very committed to the success of the European Reference Networks (ERN), in particular ReCONNET where we have a very active role. One of our key contributions is to raise the patient voice. Professor Hachulla is seeking our input on unmet needs in the area of Therapeutic Education. We would like the questionnaire […]
Alain CornetToday is the first day of the big European Rheumatology Congress, EULAR. The 2018 edition is being held in Amsterdam and will reunite thousands of delegates, mainly medical professionals. Eular is “a platform to facilitate interactions between patients, medical doctors, scientists, health professionals and professionals representing the pharmaceutical industry, both from within Europe and from […]
Alain CornetWe at LUPUS EUROPE wish you all a great World Lupus Day, full of hope and awareness! For this we have created a little animated video about LUPUS EUROPE. Please feel free to share! [wpvideo ILoguQxs] We would also like to repost a video made a couple of years ago about the importance of World […]
Alain CornetLUPUS EUROPE BECOMES FIRST ASSOCIATE MEMBER OF SLEuro, the European Lupus Society We are very proud to announce that LUPUS EUROPE has just become the first Associate member of SLEuro, the European Lupus Society. SLEuro is a voluntary and non-political association with social and philanthropic purposes that promotes scientific research and information with regard to […]
Alain CornetOn December 6th Katharine Wheeler participated in the closing conference for EPF’s campaign on Access to Healthcare for All. At the conference EPF presented their Roadmap for Universal Health Coverage for all. Katharine was invited to speak as a patient organisation representative and stressed the importance of leaving no-one behind if we want to achieve […]
Alain CornetThe LUPUS EUROPE annual convention has just come to a close. Hosted in Milan by Lupus Italy on the occasion of their 30thanniversary, the convention was an inspiring event centred around the theme of “pain, fatigue and stress”, with Dr Chiara Tani as a key note speaker. Benefitting from the Italian Lupus Clinic experience, we […]
Alain CornetMay 10th is World Lupus Day What is lupus? Lupus is a chronic autoimmune disease that causes the immune system to attack the body’s connective tissue and organs. Parts of the body affected can include the joints, kidneys, heart, lungs, brain, blood and skin. Up to 500,000 people in Europe have lupus. 90% of people […]
Alain CornetToday is World Lupus Day, a great time to be thinking about bringing the Lupus World together. ‘Meet the Lupus World’ is our theme for the Lupus Summit in Vienna on 5th September 2015. The summit will take place as an integral part of our annual convention. Make sure your group is represented by getting in touch with […]
📣 #meetthespeakers! We are delighted to have Prof. Marta Alarcón-Riqueleme from @genyo_pts as a speaker @ConferenceEfi, #plenary session IV "#ai & big data transforming medical research"
Don't miss her talk👇
@3TR_IMI @twit_PAG @soumya_boston @yluo86 @jillahjillah @So_Limou https://twitter.com/ConferenceEfi/status/1640685435599896577
📢 #EFI2023 PLENARY SPEAKER ANNOUNCEMENT!
Meet Prof. Marta Alarcón-Riquelme 👏
She will speak about: "Using transcriptome data to stratify and predict treatment responses in lupus and other systemic autoimmune diseases"
Reserve your spot 👉 https://lnkd.in/eFWEtXq7
✅ In #PANLAR2023, I will give a talk about "10 pearls in #Lupus". My pearl #1 ⬇️ is that there is an ongoing debate about the optimal daily dose of #hydroxychloroquine in #SLE. My point of view is that it's a trade-off between efficacy and eye 👁️ toxicity.
➡️ What do you think?
Proud to see some of our PAN members in the @eupatients Patient Expert Training Programme!
Best of luck to all the trainees!
Exciting day as our 105 trainees attend the Patient Expert Training Programme online event😍
Over 4 days our #Cohort6 will get to know each other & continue to study together 🤓
Fantastic start this morning & best of luck with your studies 🙏
#IAmEUPATIFellow #OpenClassroom
More answers needed from patients!
Please share so that it can reach more people 🙏 .
Thank you!
@chriswincup @Cambridge_Uni The new INSPIRE survey can be completed by lupus patients or their carers from around the world. Please share as much as possible in order to get a sample that includes a good proportion of all ethnic groups. Thank you!
https://bit.ly/inspire_patients_short
🚨 Call for patients🚨
🔊 INSPIRE SURVEY from the University of Cambridge.
This survey aims to improve the understanding of neurological symptoms in SLE and other rheumatic conditions.
Lupus is a very heterogeneous disease, which means that it affects people of different ethnic backgrounds and gender in different ways.
That is why, to get accurate research results, as many different groups as possible must be represented in the sample.
The INSPIRE survey was launched last year to get the patient experience on the assessment/monitoring of neurological symptoms, but they received very few responses from people from ethnic minorities.
That is why the research team led by Dr Chris Wincup has launched a new survey.
The new INSPIRE survey can be completed by lupus patients or their carers from around the world.
🟣 Please share as much as possible 🟣 in order to get a sample that includes a good proportion of all ethnic groups.
Thank you!
bit.ly/inspire_patients_short
I did it a second time and no it went good till the end
The survey was demolished.
Discoid lupus erythematosus (DLE) is the most common form of chronic cutaneous lupus erythematosus. It is characterised by persistent scaly plaques on the scalp, face, and ears, which can progress to scarring, atrophy, depigmentation, and permanent hair loss in affected hair-bearing areas (Source: DermNet).
This study, published by Prof Marca Mosca et al., describes 2 cases of severe and refractory DLE successfully treated with anifrolumab, a human monoclonal antibody.
Although anifrolumab has been recently approved for the treatment of SLE, data from randomized clinical trials have shown a significant difference in cutaneous response rate in patients treated with anifrolumab from those in the placebo group.
While the effectiveness of this treatment in real life and in different types of skin lesions has yet to be determined, it could represent a new valid opportunity for treating DLE.
jamanetwork.com/journals/jamadermatology/article-abstract/2798967
We know some of you missed the great seminar recently delivered by Prof. Laurent Arnaud.
Well, no worries!
You have the chance to see it again, thanks to the European Federation of Internal Medicine (EFIM).
"Challenges in 2023 for Systemic Lupus Erythematosus".
Next 29th of March at 18:00 CET (i.e. Paris time).
Register for free here!
us02web.zoom.us/webinar/register/WN_O5yMwjfgTS29pMKvOZfgZw
Did you miss this ERN RECONNET webinar with Lou Kawka and Prof Laurent Arnaud about #fatigue in #SLE?
Now you have the chance to watch it!!! 😃🙌
www.youtube.com/watch?v=7jc7SiP5BsA
