Alain CornetHas your member group registered for the LUPUS EUROPE convention yet? Remember that the deadline for special conditions is 15th June 2016. The convention will take place in the beautiful historical city of Würzburg, Germany from 28th September – 2nd October 2016. It is also an important occasion for our hosts, the German Lupus association, who are […]
Alain CornetThis week Andreas’ is running with the German Lupus association who are celebrating their 30th anniversary this year – and hosting our annual LUPUS EUROPE convention as part of those celebrations. Click the flag to see more.
Alain CornetWhat does quality of healthcare mean for you? Take the EPF survey! Deadline: 31st May 2016 Quality of healthcare is at the heart of European Patients’ Forum’s work. EPF is conducting a survey which aims to explore the perceptions of patients about what “quality” means for them, and what matters most in quality of care. Please note […]
Alain CornetThis week, our marathon hopeful, Andreas is running for France’s two lupus associations. This is a great opportunity to highlight a couple of World Lupus Day initiatives taken by these two associations. AFL + chair, Marianne Rivière, was interviewed for “pourquoi docteur”. You can find the full interview (in French) here. Among other activities planned […]
Alain CornetWhen I got my lupus diagnosis in 2011 I was a very active young woman with a teaching job and on my way to study for a PHD at Aarhus university. I have a master’s degree in German and Philosophy and I loved teaching. I used to be a fitness instructor during my studies and […]
Alain CornetFor World Lupus Day, Anne Charlet, vice chair of LUPUS EUROPE, was interviewed by MedTech. When Anne Charlet’s teenage daughter complained of extreme fatigue, she thought it was just end-of-school year tiredness or anaemia. But a precautionary blood test that revealed an unusually low platelet count led to a completely unexpected diagnosis several months later: […]
Alain CornetMy Lupus story doesn’t start in 1993 with an SLE diagnosis, but eight years earlier in 1985, when at the age of 22 I got pneumonia for the first time. O spent two weeks in hospital with a horde of doctors around my bed wondering why antibiotics weren’t working. The oldest doctor mentioned that I […]
Alain CornetWhen it was first suggested that I write a patient story for Lupus Europe, I have to say that I felt a little uncomfortable. Firstly, I’m an intensely private person and have so far never wanted to write about myself or write a blog. Secondly my ‘lupus’ is relatively mild (in the medical sense rather […]
Alain CornetI met my Lupus on a sunny day of April 2003 when I was 23 years old. A year ago, I was hospitalized because I fainted with seizures. At the time, the doctors told me that anyone can have such episodes once or twice during their life. However, a neurologist in training thought that I was […]
Alain CornetMy story – by Yvonne from the Netherlands On 6 July 2004, I woke up with a tremendous pain in my right hand. Because I also had a slight rash, my GP immediately referred me to a dermatologist. He examined me and referred me to a rheumatologist because he had a hunch what might be […]
The first day of #lupus2022 is not finished yet! Time for the Opening Ceremony at the Stockholm City Hall!
#LUPUS2022
A decade of #belimumab use in #SLE
Check out the key points by @IoannisParodis @parodislab
@SLEuroSociety @karolinskainst
Compelling talk by Prof. Guillermo Ruiz-Irastorza on a subject of topical interest: how to use glucocorticoids in SLE? #LUPUS2022
Take home messages from Dr. Guillermo Ruiz-Irastorza in #Lupus2022 about #glucocorticoids #corticoids in #SLE #Lupus
Excellent conference by Dr. Guillermo Ruiz-Irastorza in #Lupus2022 about #Glucocorticoids on SLE, 70 years of learning. Remarks on @mugartegil paper and his own experience and important research with corticoids.
#Lupus
Very interesting and promising research on #pregnancy in #SLE and APS (ongoing), SLE-PLACENTA Study in #Sweden by Dr. A. Lundell. Putting the eyes in density of neutrophils intra and postpartum. I hope to read that important paper soon.
#LUPUS2022 #Lupus
Well done to @LupusEurope on their launch of http://www.lupus100.org at #LUPUS2022. Everyone should be able to learn about #lupus, regardless of where they live or their language. This is an exciting and vital initiative.
#Lupus100 https://twitter.com/LupusEurope/status/1577613349134671872
At the occasion of the European Lupus Meeting #lupus2022, we are launching #lupus100! A website where you will be able to find all the answers.
Thanks to our collaborators @ern_reconnet, FAI2r and Katana Santé!
Visit https://lupus100.org/
Glucocorticoids have been used in systemic #lupus erythematosus treatment since the late 1940s. Dr. Ruiz-Irastorza, from @equipo_eas, is now going to show us what we have learnt in these years & how it is possible to use doses < 5 mg/day as a maximun when treating #SLE
#lupus2022
A shout-out to #3TR partner @LupusEurope and everyone contributing to this fantastic and vital resource!
👉Visit #Lupus100: http://www.lupus100.org https://twitter.com/LupusEurope/status/1577613349134671872
At the occasion of the European Lupus Meeting #lupus2022, we are launching #lupus100! A website where you will be able to find all the answers.
Thanks to our collaborators @ern_reconnet, FAI2r and Katana Santé!
Visit https://lupus100.org/
Amazing and important conference about poligenic risk for #SLE, a higher risk is associated with early onset and poor outcomes in #SLE (increased risk for nephritis, organ damage and mortality) by Dr. Sarah Reid from @uppsalauni #Lupus2022
It is mandatory create models to predict
📢BIG NEWS: for every question about lupus, #lupus100 has the answer! @LupusEurope
#LUPUS2022 https://twitter.com/LupusEurope/status/1577613349134671872
At the occasion of the European Lupus Meeting #lupus2022, we are launching #lupus100! A website where you will be able to find all the answers.
Thanks to our collaborators @ern_reconnet, FAI2r and Katana Santé!
Visit https://lupus100.org/
After a fruitful meeting, our PAN members will be having a workgroup on an exciting project for patients in research. At the occasion of the #lupus2022 meeting we will also discuss some of our projects with the specialists attending!
Dag Leonard presented data on the link between genetic background and clinical manifestations in SLE #LUPUS2022
Visit http://lupus100.org!
#lupus100 #lupus2022 https://twitter.com/LupusEurope/status/1577613349134671872
At the occasion of the European Lupus Meeting #lupus2022, we are launching #lupus100! A website where you will be able to find all the answers.
Thanks to our collaborators @ern_reconnet, FAI2r and Katana Santé!
Visit https://lupus100.org/
Do you want to know what PAN is? Do you want to be part of the team? #lupus2022 ⬇️
The PAN is a team of 25-30 trained & energised patients, experienced in living with lupus, appointed by LUPUS EUROPE to act as liaison & resource to value-adding scientific projects, CT & other research related to lupus,including @eular_org, @SLEuroSociety & @ern_reconnet
Our PAN members are getting ready to participate actively in this #lupus2022 @SLEuroSociety meeting! Did you know that our PAN members meet every 2 months to share their projects and the trainings they are taking part in?
At the occasion of the European Lupus Meeting #lupus2022, we are launching #lupus100! A website where you will be able to find all the answers.
Thanks to our collaborators @ern_reconnet, FAI2r and Katana Santé!
Visit https://lupus100.org/
📢 Today the 𝟭𝟯𝘁𝗵 𝗘𝘂𝗿𝗼𝗽𝗲𝗮𝗻 #𝗟𝘂𝗽𝘂𝘀 𝗠𝗲𝗲𝘁𝗶𝗻𝗴 starts in Stockholm 🇸🇪 with participation of #3TR member @IoannisParodis of @parodislab and @karolinskainst❗️
👉 https://sleuromeeting.com/
➡️ #lupus2022
👇 https://twitter.com/LupusEurope/status/1577309819291291650
. @3TR_IMI, funded by IMI & @EFPIA, aims to provide new insights into the mechanisms of response and non-response to treatment and will integrate the analysis of seven different disorders. At #lupus2022, @IoannisParodis et al. will show us the SLE protocol https://buff.ly/3yakTiM
#SLE can be classified into 4 subgroups according to @LinMarDiaz: 1) HLA-DRB01/03/04, anti-Ro, CXCL10 & skin 2) HLA-DR03/15/01, anti-SmRNP/DNA, IFNγ & nephritis 3) HLA-DR01/03/07/04 anti-β2GPI/aCL, IL-16 & vascular events 4) auto-Ab neg & less severity
#lupus2022 #RheumTwitter
Great talk by C Lood on the role of mitochondria in #SLE. N-formyl peptides and mitoDNA release is central in #lupus patients and can induce neutrophil activation and inflammation. More data on how novel anti-mitochondrial IgG antibodies induce inflammation to follow. #lupus2022
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 Gaia VonÖrn from the Reumatikerförbundet, who has told us so many interesting things. Read about the unmet needs in Sweden:
"People must be able to access specialist care for their lupus in order to get their disease under good control. We need a lot more awareness about lupus in Sweden. In our experience, GPs can have poor knowledge and awareness of lupus, and this can cause serious delays in referrals to rheumatology clinics for initial consults. Patients often have very late diagnoses and can develop complications from their lupus".
"We believe it is important for patients to have access to pain specialists. Many lupus patients suffer from chronic pain and it can take a very long time to access pain clinics. Pain specialists are crucial in educating patients on pain management and the options available to them and to follow up people to ensure their pain is well managed".
Tell us! Where do you live? Do you think these unmet needs are common in European countries?
You can read more about the Swedish Rheumatism Association in our blog:
Thanks to the hard work of investigators and a more active participation of patients in investigation we know more about lupus, its pathogenesis and management. However, we still have many questions without answer.
What is the one for which you most wish there was an answer?
#Lupus100. In collaboration with ERN RECONNET, Katana Santé and Fai2r
What are the chances of finding a cure for lupus today compared to 20 years ago? Still the same, better, surprises ahead?
Can we hope in a solution for the extreme fatigue we feel after our very good doctors manage to put us in remission?
Proliferative lupus nephritis progresses to end-stage kidney disease in roughly 10% of the cases despite treatment. Persistent isolated C3 hypocomplementemia could be a strong predictor of end-stage kidney disease, according to this study in KI Reports
www.kireports.org/article/S2468-0249(22)01773-9/fulltext
www.kireports.org
Proliferative lupus nephritis (LN) progresses to end-stage kidney disease (ESKD) in roughly 10% of the cases despite treatment. Other than achieving < 0.8 g 24-h proteinuria at 12 months after treatme...
The “Living with lupus in 2020” survey has highlighted the need for change in access for #lupus patients. That is why we chose "Access" as the theme of our 2022 #LupusConvention.
What is your experience in regard to acces?
You can read the full convention report here:
www.lupus-europe.org/wp-content/uploads/2022/09/Convention-Report-2022-1-1.pdf
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