Month: May 2015

EPF spotlight on Lupus Europe and World Lupus Day

Lupus Europe has featured in EPF’s latest newsletter, with a focus on our World Lupus Day campaign. Click here to see the article.

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About being a trustee – Katharine’s story

Alain Cornet
Posted on May 17, 2015
CategoriesUncategorized
4 Comments on About being a trustee – Katharine’s story

Here 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 […]

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Meet the Lupus World at the ICL in Vienna

Today 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 […]

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About being a trustee – Kirsi’s story

Alain Cornet
Posted on May 7, 2015
CategoriesUncategorized
1 Comment on About being a trustee – Kirsi’s story

From 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 […]

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The importance of World Lupus Day

We 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]

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Live Twitter Feed

Lupus Europe Follow 5,933 3,608

Lupus Europe is the umbrella association of currently 31 national lupus self-help organisations throughout Europe, and supports people with lupus in Europe.

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; Laurent ARNAUD @Lupusreference ·

21 Apr 1782082790642839797

✅ #Rosacea versus #LUPUS ⬇️
Practical tips for distinguishing the 2 conditions 👍

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; Lupus Europe @LupusEurope ·

22 Apr 1782428279221195104

🚨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 ⤵️

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; Laurent ARNAUD @Lupusreference ·

19 Apr 1781347561221009574

✅ 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?)

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; Donald Thomas, MD @lupuscyclopedia ·

18 Apr 1781049456458117278

🔥 #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

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; Laurent ARNAUD @Lupusreference ·

19 Apr 1781214145993474455

✅ 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 👍

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; Lupus Europe @LupusEurope ·

19 Apr 1781231778566434827

✍🏻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

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; EUPATI @eupatients ·

17 Apr 1780599208841707623

📣 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

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; Alberta Hoi @alberta_hoi ·

18 Apr 1780759680127791322

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

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2 days ago

♦️ 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

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3 days ago

♦️ 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

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4 days ago

♦️ 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

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5 days ago

✍🏻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.

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✍🏻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.

https://s.surveylegend.com/-NqgyeOSaTVcd7gBoK15

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💪💪💪