Alain CornetThe Vienna Convention is just over two months away now. Has your organisation submitted its trustee nominations yet? If you have someone you think could be an asset, please don’t hesitate to get in touch with the LUPUS EUROPE secretariat (secretariat@lupus-europe.org) for more information on how to apply. We are also still looking for volunteers to […]
Alain CornetJune is quite a busy month for LUPUS EUROPE and its representatives. Here’s some of what’s going on. Nuria Zúñiga is representing LUPUS EUROPE at Doctors 2.0 & You from 4th-5th June in Paris. She will also be representing us at the Eyeforpharma patient summit in London from 25th-26th June and at Aware for All in London. […]
Alain CornetLupus Europe has featured in EPF’s latest newsletter, with a focus on our World Lupus Day campaign. Click here to see the article.
Alain CornetHere is our second ‘Trustee story’, this time from Katharine. When I was first diagnosed, I didn’t even know that there was a patient association in my country, let alone a European umbrella organisation working towards common goals on behalf of other European associations. I haven’t been able to work for a few years due […]
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 […]
Alain CornetFrom the invitations to the convention which have just been sent out, you will see that there are two trustee positions up for election in September of this year. Having good candidates to carry on our work is extremely important, as is keeping a dynamic team and that means bringing in fresh people. Becoming a trustee […]
Alain CornetWe are happy to share a video for World Lupus Day where Claudine, Jane and Jeanette speak of the importance of such an event. [youtube https://www.youtube.com/watch?v=ae14ZLCdbqg&w=560&h=315]
Alain CornetWe are currently at the Eular PARE congress in Dublin and delighted to report that our World Lupus Day poster has been very well received. Here are some of the comments, among many: “Very evocative”, “A really strong message”, “It really talks to me of control, not a question of being ‘friends’ with the wolf […]
Alain CornetIf you are a member of one of LUPUS EUROPE’s member organisations and are interested in getting more involved as a patient advocate – spreading awareness, attending events, working on specific projects… we would love to hear from you. Even if you can only offer a little of your time, your contribution could make a […]
Alain CornetInterview with Jan Geisler, director of EUPATI, on the Patients’ Academy. He answers questions such as: “What is the goal of EUPATI?” “Why did you feel it was necessary to create such an academy?” “What is the profile of the students enrolled in the EUPATI course?” “What will they (the students) learn?” To view the […]
✅ Cognitive dysfunction is a MAJOR topic in #LUPUS because of the impact it has on patients. If you have #SLE please HELP US validate the Lupus Brain Fog Severity Scale #LBFSS so that we can help more. Participation to this research takes ~15 mins
LINK: https://lupusresearch.limequery.org/337533?lang=en
🛠️ Maintenance alert:
We are carrying out maintenance work on our main website.
🌐 During this time, you may experience limited access or temporary disruptions.
In the meantime, you can visit #LupusGPT and #Lupus100 for lupus info!
Thank you for your support & understanding!
🧠 Brain fog in lupus is real, but its meaning has never been clearly defined in a lupus-specific way.
🙏 Help us & the research team led by Prof @Lupusreference validate the Lupus Brain Fog Severity Scale (LBFSS).
Your input is essential.
https://lupusresearch.limequery.org/337533?lang=en
‼️If you have #lupus and #BrainFog, it’s important that you take part in this survey‼️
✅ Cognitive dysfunction is a MAJOR topic in #LUPUS because of the impact it has on patients. If you have #SLE please HELP US validate the Lupus Brain Fog Severity Scale #LBFSS so that we can help more. Participation to this research takes ~15 mins
LINK: https://lupusresearch.limequery.org/337533?lang=en
🛠️ Maintenance alert:
We are carrying out maintenance work on our main website.
🌐 During this time, you may experience limited access or temporary disruptions.
In the meantime, you can visit #LupusGPT and #Lupus100 for lupus info!
Thank you for your support & understanding!
🚨Calling all men with lupus in Europe!
Join other men in this 𝗢𝗡𝗟𝗜𝗡𝗘 𝗘𝗩𝗘𝗡𝗧 organised by men with lupus.
📅 10th January (this Sat)
🕙 10am CET
📍Online
E-mail ricky@lupus-europe.org to register
🔝 Hosted by Lupus Europe, facilitated by @ricky_chotai & @apanteli
Lupus nephritis is a type of immune-mediated glomerulonephritis and a serious complication of systemic lupus erythematosus that can affect up to 60% of patients with this condition.
Lupus nephritis
Nature Reviews Disease Primers - Lupus nephritis is an autoimmune-mediated glomerulonephritis and a serious complication ...
www.nature.com
