Alain CornetThe blog has been quiet recently, and with good reason! We have all been so busy attending events, participating in work groups and meeting face-to-face, that we haven’t been able to keep up on the blog – despite our super-human lupus powers! Hopefully you’ll know everything that has been going on from reading the […]
Alain CornetAs discussed during its Annual General Meeting last month, the European Patients’ Forum is deeply concerned with the very uncertain future of European health collaboration and of the Health Programme post-2020. The five scenarios proposed by the European Commission Mr. Junker in April show that health is not a priority for the European Union. To […]
📣 #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
