Alain CornetHelp us understand the multiple facets of life with lupus today…
Alain CornetSince Hydroxychloroquine (HcQ) has been regularly mentioned in media as a potential medication in the fight against COVID, the number of patients highlighting unavailability issues increased substantially. With the help of its members, LUPUS EUROPE initiated a survey amongst patients to obtain broad based feedback on the magnitude and impact of the issue. Results covering […]
Alain CornetOver the past weeks, LUPUS EUROPE and several of its members have worked to improve availability of Hydroxychloroquine for people with lupus in Europe, as speculations on its possible use for COVID treatment have resulted in an increased (off-label) demand. Our objective is that all patients with a chronic condition requiring Hydroxychloroquine have access, if […]
Alain CornetLUPUS EUROPE and the ERN ReCONNET Patient representatives have launched a short survey to better understand how we can improve quality of life for people living with a rheumatic condition through better patient education. If you are a patient living with a Rheumatic condition or any other Chronic or rare disease, simply follow this link […]
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 would very much like to share some news with you! If you are a Lupus Europe member or potential member, volunteer or potential volunteer, or simply a member of the patient community interested in the activities of LUPUS EUROPE, join us on February 17, 2020 at 20:00 Paris time. On the agenda:– Introduction of […]
As part of its cooperation with the ERN ReCONNET, Lupus Europe is launching an important survey, which we would like to ask you to disseminate as largely as you can to people actually living with lupus. We have made the effort of providing 13 different languages, and are open to adding new ones, so we hope […]
Alain Cornet30 Years ago, on May 26, 2019, LUPUS EUROPE’s Constitution (then under the name of ELEF) was signed… The European Lupus Federation was born. as we celebrate this anniversary, we asked current and past Chairs to reflect on those years in support of People living with lupus in Europe. Yvonne Norton, Chair from 2002 […]
Alain CornetThe 22nd EULAR Annual European Conference of PARE took place in the stunning, historical city of Prague in the Czech Republic 5-7 April 2019 with over 120 delegates. PARE ‘People with Arthritis and Rheumatism in Europe’ forms an integral role at EULAR ‘The European League Against Rheumatism’. The presentations and workshops at the PARE Conference […]
✅ #Rosacea versus #LUPUS ⬇️
Practical tips for distinguishing the 2 conditions 👍
🚨𝗗𝗲𝗮𝗱𝗹𝗶𝗻𝗲 𝗔𝗽𝗽𝗿𝗼𝗮𝗰𝗵𝗶𝗻𝗴 𝗙𝗮𝘀𝘁❗
Please take part in the Living With Lupus in 2024 survey.
🗣️ Your insights are crucial for capturing the diverse experiences of those living with #lupus across Europe.
🧵Find the link for all 21 languages in this thread ⤵️
✅ Management of #glucocorticoids at the 4th advanced workshop on #Lupus by @SLEuroSociety by J Delgado Alves:
- Main mechanisms of action
- Optimal starting dose (organ- and severity driven)
- Tapering strategy (how fast/additional medications?)
- Stopping? (Yes/no/who?)
🔥 #SLE #lupus patients: Be part of the conversation. Let your voice be heard.
What is it like living with lupus?
Help @LupusEurope learn more about lupus patients so the rest of us know what you are going through
✅ Today is the start of the 4th @SLEuroSociety Advanced #Lupus #Workshop, an event created when I became President of the European Lupus Society. We bring together 30 lucky participants + an amazing faculty for 2 days of intensive & collective discussion of complex #SLE cases 👍
✍🏻Пройдіть опитування.
🔊Поділіться з вашою громадою.
👨🏼⚕Якщо ви медичний працівник і лікуєте пацієнтів з лупусом в Європі, ми були б дуже вдячні, якби ви поінформували своїх пацієнтів.
https://buff.ly/3xIyiBy
📣 One week left to register for our online EUPATI Essentials Training! 📣
Are you an industry, academia or consortium member wanting to enhance your knowledge on patient engagement?
🎯 Register now ▶️ https://bit.ly/4auAmen
#EUPATI #Essentials #OnlineTraining #RegisterToday
My absolute pleasure to work with @Lupusreference CC Mok and Talia for this nice review, prepared for the general medical community to better understand Dx challenge and Mx of SLE. Lots we can do to improve outcomes inc comorbidity burden! https://authors.elsevier.com/a/1ixq7V-4XOrME
♦️ Few days left to fill the Living With Lupus in 2024 survey!
✍🏻Doe mee aan de enquête.
🔊Deel met uw gemeenschap.
🙏 Help us and NVLE achieve more answers to ensure that the Dutch population is represented in the results
buff.ly/3xGBU6T
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♦️ Few days left to fill the Living With Lupus in 2024 survey!
✍🏻Deltag i undersøgelsen.
🔊Del med dit fællesskab.
👨🏼⚕Hvis du er sundhedsprofessionel og behandler patienter med lupus i Europa, ville vi sætte stor pris på, at du informerer dine patienter.
🙏 Help us and Sle-Lupus- info achieve more answers to ensure that the Danish population is represented in the results
s.surveylegend.com/-NqmjTjyUXHGLMmAu5qS
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♦️ Few days left to fill the Living With Lupus in 2024 survey!
✍🏻Dalyvaukite apklausoje.
🔊Dalinkitės savo bendruomenėje
👨🏼⚕Jeigu esate sveikatos priežiūros specialistas ir gydote vilklige sergančius pacientus Europoje, būtume labai dėkingi, jei informuotumėte savo pacientus.
🙏 Help us and Lupus Lt achieve more answers to ensure that the Lithuanian population is represented in the results
s.surveylegend.com/-NqwWcQ0UhyMxDtCBYRD
0 CommentsComment on Facebook
✍🏻Doe mee aan de enquête.
🔊Deel met uw gemeenschap.
👨🏼⚕Bent u een gezondheidsmedewerker en behandelt u lupuspatiënten in Europa, dan waarderen we het zeer als u uw patiënten deze informatie verstrekt.
s.surveylegend.com/-NqgyeOSaTVcd7gBoK15
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