Marisa CostaAs relayed in the media, Hydroxychloroquine (Plaquenil, Quensyl,…) is being investigated as a potential treatment for COVID-19 related pneumonia. We all hope that it will help improve the outcomes of those affected by the disease. Unfortunately, in some countries, this has resulted in stock-piling, and the unplanned increase in demand has created shortages, causing anxiety […]
Alain CornetDid you know? Lupus is a Rare Disease! Lupus is rare, but not for us! Come and join us working on our vision: A fulfilling life for all people with Lupus in Europe until we have reached a world without Lupus What is a rare disease? It changes from country to country, but in Europe […]
Alain CornetWe are very proud to announce that LUPUS EUROPE has been recognized by the EMA (European Medicine Agency) as “eligible entity”, the select network of patient organizations that work with the EMA to ensure that the needs and concerns of a wide range of patients are represented via direct contact with the Agency. This status […]
Alain CornetWe all know that there remains a lot to explore, and many unmet needs are still there, with regards to lupus and people living with lupus in Europe and in the world. Since March 2018, a multidisciplinary team including doctors, academics and patient advocates have shared their thoughts and aligned priorities to improve lupus care. […]
Alain CornetAs announced in today’s Webinar, LUPUS EUROPE is offering new opportunities for people living with lupus to volunteer and support the cause. Specifically, we are looking for 6 new members for our Patient Advisory Network, and 6 more to create a new Lupus Communication Group. PATIENT ADVISORY NETWORK (PAN) The PAN is a network of people having lupus that structurally […]
#EULARAdvocacy echoes the need to strengthen #Rehabilitation services and will do whatever is on our hands. Together we will push for better access and quality of #nursing #physiotherapy #occupationalTherapy #psychology for people with rheumatic diseases
.@AlarcosC explains why rehabilitation services need to be a part of universal health coverage.
She also talks about the landmark resolution on strengthening rehabilitation in health systems during #WHA76.
#Rehabilitation is a set of interventions needed for those who experience or are likely to experience limitations in everyday functioning due to ageing or a health condition, incl chronic diseases or disorders, injuries or traumas http://bit.ly/2xC1qrG
2023 SLE Recommendations
🔹Lower GC dose (5 mg instead of 7.5)
🔹 Early use of biologics for corticosparing
🔹 Cyclophosphamide if life-threatening
🔹 MMF: new in hemato manif
🔹Lupus nephritis: VCL vs BEL???
🔹Maintain trt for 3 years then taper, except HCQ
#EULAR2023
NZ
Did you miss our joint webinar with @ern_reconnet?
Among other things, Prof. @Lupusreference talked about the new @eular_org recommendations for the management of #lupus & the main changes introduced.
Head over to our Facebook page and watch it now! 👉
EULAR 2023 Debrief – for people living with lupus LIVE LINK | LUPUS...
250 views, 7 likes, 2 loves, 20 comments, 3 shares, Facebook Watch Videos from LUPUS EUROPE: LUPUS EUROPE was live.
buff.ly
📢Virtual Seminar today at 1pm with Professor Laurent Arnaud @Lupusreference. Hosted by Professor @AnisurRahman60
DoM Virtual Seminar: ‘What are the main 2023 Challenges in Systemic Lupus Erythematosus?’ Professor Laurent Arnaud, 8 June, 1:00pm https://www.ucl.ac.uk/medicine/events/2023/jun/dom-virtual-seminar-professor-laurent-arnaud
🧵Alert
#EULAR2023
🦋2023 EULAR-Recommendations on the management of lupus
🔥Summary slides
Our joint webinar with @ern_reconnet is also going on Facebook Live!
If you have not been able to register, go to our Facebook Page and enjoy "#EULAR2023 Debrief–for people living with #lupus".
1 hour to go!
https://www.facebook.com/LupusEurope
✅ Checklist for the new #EULAR2023 #Recommendations ✍️ for the treatment of systemic #Lupus, as presented by Boumpas 📺 last week for the taskforce 💪 We have been working VERY HARD to update & improve these reco compared to the previous ones (2019) 👍 #RheumTwitter #MedTwitter
Did you miss our joint webinar with ERN RECONNET?
Among other things, Prof. Laurent Arnaud talked about the new EULAR recommendations for the management of #lupus and the main changes that have been introduced.
Watch it and tell us what you think about them!
Did you know that our Chair, Jeanette Andersen was part of the task force?
😃
EULAR 2023 Debrief – for people living with lupus LIVE LINK
Today is #WORLDAPSDAY, an autoimmune disease that affects 20-30% of people with #lupus.
#APS can cause:
- Excessive blood clotting.
- Certain pregnancy complications.
Pregnancy planning and close monitoring are key to reduce the risk in pregnancy in patients with APS.
#pregnancy #planning #SLE #awareness #APSAwareness
Did you know? We presented 6️⃣ abstracts for #EULAR2023, and all 6️⃣ of them were accepted!
We also...
🙌 Had 2️⃣ oral presentations.
🙌 3️⃣ posters.
🙌 Alain Cornet was one of the abstract award winners.
🙌 Zoe presented in the scientific abstract plenary session.
Watch the interview Dr. Anthony Psarras made with Alain Cornet in Milan!
youtu.be/lLNJmCJ7iqk
Thank you Martijn, for your question! We will ensure your question is raised 🙂
Thank you for following this joint Lupus Europe / ERN ReCONNET webinar! If you have any questions for the speakers, please post them here and we will ensure they are raised! 😃
Hi from Corfu thank you for this it was really helpful!!!
I am curious about diet and microbiome as well. I think the topic is very much understudied and not good understood - but has great influence.
There are huge differences!
Are there possibility’s with food to have remission
There were only young people for the treatment with Car-T cells In am nog young any more. Is ther hope for me?
Only on my phone de zoom started. I do not know why
Metty Staal volgt
What is there to expect the coming years. I mean mean in treatments?
Thank you very much professor Arnoud
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