Alain CornetFor those of you who may have missed it or who are not signed up on our mailing list, here is the link to the convention report for LUPUS EUROPE’s annual convention which was held this year from 28th September – 2nd October 2016. If you don’t currently receive our newsletters and emails and would like […]
Alain Cornet2 weeks to go, Running for Lupus Hej, Tere, Hei, Χαιρετώ, Bonjour, Hallo, Helló, Ciao, Olá, Ahoj, Hallå, Hola, Grüezi, Halló, Dia dhuit, Shalom, As-salam alaykom, Buna, Sveiki, Zdravo Many things have happened since the last blog post. As you can see in the above picture, the t-shirt design has been finalised and ordered for printing. You will […]
Alain CornetThe 18th edition of the EULAR Annual European Congress of Rheumatology is now open for registration! To find out more, click here.
Alain CornetThere has been a good response to the sunscreens survey with 2,000 respondents so far. To really make sure this survey is a good reflection of our situations, more responses are needed. Please continue to share the link in your patient network. The deadline for responses is 31st October 2016. The European Society of Cutaneous Lupus […]
Alain CornetToday is World Arthritis Day. A day being honoured by The EULAR Conference on reducing the burden of chronic diseases in the workplace for people with RMDs. The conference is focusing on identifying and discussing relevant issues related to the working environment and how to move forwards. The conference was opened by EULAR president Prof. Gerd R. […]
Alain CornetEPF publishes a guide for patient organisations on the new Data Protection Regulation The new Regulation on personal data protection (EU/2016/679) was published in May 2016 and will apply from May 2018. It provides more rights to citizens to be better informed about the use made of their personal data, and gives clearer responsibilities to […]
The LUPUS EUROPE convention has come to a close. Four intensive days of work, sharing, inspiration, education and exchange! We have all learned a lot from each other and from the wonderful speakers who shared their knowledge with us. A huge thank you goes out to our members who made this convention a great success […]
📣 #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
