Alain CornetDear Members, You might have received a mail from PatientView, seeking input to their study on the corporate reputation of the pharmaceutical industry in 2015— from the perspective of patient groups. We also know that some of you have not received it, and would be interested in taking part. We therefore relay the information so […]
Alain CornetOur first patient stories have arrived in our inbox. What a treat to read and something we look forward to sharing with you all in the near future. We are still looking for further contributions so, if you’re wondering what to do with all that spare time over the holidays (and beyond), don’t worry, the […]
Alain CornetInput is being sought from European Patients’ Forum members on the Patient Empowerment Charter. The deadline for feedback is 10th January 2016. For more information please click here. The European Patients’ Forum has also put together its draft position paper on Cross Border Healthcare. Feedback is invited from member groups. More information here.
Alain CornetThe final dates have been set for the Patient Panel. The Patient Panel is seeking participants and will take place in Brussels from March 11-13th 2016. This is a rare and unique opportunity for patients to participate in a truly worthwhile experience. All costs, travel, accommodation and meals are reimbursed. For further information, please click […]
Alain CornetLupuzorTM enters phase III Press release from the CNRS Paris, 15 December 2015 LupuzorTM may become the first specific and non-immunosuppressant therapy for lupus, a disabling autoimmune disease that is currently incurable. Discovered by Sylviane Muller’s team in the CNRS Immunopathologie et Chimie Thérapeutique laboratory, in Strasbourg, this peptide is the subject of a CNRS […]
Alain CornetA UNIQUE OPPORTUNITY to meet people living with lupus from around Europe LUPUS EUROPE is looking for people interested in participating in its 2016 Patient panel which will address the burden of living with lupus, with a particular focus on treatment day after day. The questions discussed by the group will cover the realities […]
You can still register for the "#EULAR2023 Debrief–for people living with #lupus" webinar that we have organised with @ern_reconnet‼️
With Prf @Lupusreference & our Chair @Jeanette_Lupus
Today at 19.30 CEST
Register➡️ secretariat@lupus-europe.org
🚨Registration compulsory🚨
Thanks to @LupusEurope for letting me live this great experience at #EULAR2023 and get to see my Lupus Europe family again!
Volunteering is the greatest thing ever! And I am so proud to be part of this organisation 🙌🏻🙌🏻
Don’t miss this unique opportunity and register now for this webinar that we have organised with @ern_reconnet and that will take place tomorrow!
Send an e-mail now to secretariat@lupus-europe.org.
📣@ern_reconnet shares the #webinar done together with @LupusEurope
Speakers will be Prof @Lupusreference n @Jeanette_Lupus on "#EULAR2023 Debrief – for people living with #lupus"
🗓️May 7th at 19.30 CEST
Register at: secretariat@lupus-europe.org
Link: http://bit.ly/45QGmMS
One of our PAN members explains to the Italian #lupus community what is #Lupus100 and what it can offer: high-quality and reliable information about #lupus in a patient-friendly language!
At the moment, available in 🇬🇧 🇩🇰 🇩🇪 🇪🇸 🇬🇷 🇫🇷 🇮🇹 🇳🇱 🇷🇴 🇫🇮 🇺🇦.
https://lupus100.org/
The #EULAR #lupus task force has made a big effort to update the current guidelines for management of #SLE. Prof D. Boumpas has highlighted in #EULAR2023 that the new guidelines will be applicable to all international #rheumatology communities. See below:
#EULAR2023 #SLEuroLottery #Bruges2024
Last few hours to come meet us at the SLEuro booth and try to win a free registration for the 14th European Lupus Meeting in Bruges!
You can participate in the lottery if you register as a SLEuro member or if you bring a new one.
Rumours, unchecked data, unconfirmed research... all contribute to confusion➕anxiety in patients, which can lead to 👎 decisions.
#Lupus100 aims to change this by providing ℹ️ & education about #lupus in their native language
👀 @eular_org press release
https://buff.ly/43nakXc
✈️ We hope you enjoyed your onsite congress experience in Milan!
📑Download your Certificate of Attendance today and receive accreditation for #EULAR2023!
👉https://account-congress.eular.org/Home/Index/Account
#EULAR #Rheumatology
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
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! 😃
www.facebook.com/LupusEurope
🚨Don't miss our webinar today🚨
Along with ERN RECONNET, we have organised this "#EULAR2023 Debrief–for people living with #lupus" webinar with speakers Prof. Laurent Arnaud and our Chair, Jeanette Andersen.
Today at 19.30 CEST (i.e. Paris time).
Register by sending an email to secretariat@lupus-europe.org now!
This is the link to the webinar: us02web.zoom.us/postattendee?mn=M427EvtnmvHdk0JAHWvzvFfSLI8DNl0Dwz8Q.UQk33isEc4kWzlqy
𝗛𝗼𝘄𝗲𝘃𝗲𝗿, 𝘆𝗼𝘂 𝘄𝗶𝗹𝗹 𝗻𝗼𝘁 𝗯𝗲 𝗮𝗱𝗺𝗶𝘁𝘁𝗲𝗱 𝘁𝗼 𝘁𝗵𝗲 𝘄𝗲𝗯𝗶𝗻𝗮𝗿 𝘂𝗻𝗹𝗲𝘀𝘀 𝗿𝗲𝗴𝗶𝘀𝘁𝗲𝗿𝗲𝗱.
Registration is compulsory.
Not succeeding to send an email for registration. I would like to participate. Thanks
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One of our PAN members explains to the Italian lupus community what is #Lupus100 and what it can offer: high-quality and reliable information about #lupus in a patient-friendly language!
At the moment, available in 🇬🇧 🇩🇰 🇩🇪 🇪🇸 🇬🇷 🇫🇷 🇮🇹 🇳🇱 🇷🇴 🇫🇮 🇺🇦.
More languages to come soon! Stay tuned, and don't miss it!
lupus100.org/
Grazie
💜💜💜
