Trustee nominations and volunteers

The 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 help out with various projects or attend events on our behalf. We would like to thank those who have already stepped forward and offered to help but there is so much going on and so many important initiatives in patient advocacy that more volunteers are always welcome. If you’d like to be part of that valuable work, please get in touch.

8A7A3660 — The LUPUS EUROPE team at EULAR PARE in Dublin

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Lupus Europe Follow 3,256 2,393

Lupus Europe is the umbrella association of currently 29 national lupus self-help organisations throughout Europe, and supports people with lupus in Europe.

; Lupus Europe @LupusEurope ·

58m 1526996039466635269

Many of the treatments used in #lupus are not specifically approved for #SLE. However, they have been proven to be safe and effective. If you wish to learn more about drug repurposing, don't miss out #EULAR2022

EULAR @eular_org

📢 Attend the #EULAR2022 Scientific session:
👨‍⚕️ Drug repurposing in Rheumatology: from bench to bedside
👉 Learning objectives https://bit.ly/3jWYONi

🔔 Accessible on #EULAR2022ondemand until 31 July
⭐ Register now https://congress.eular.org/registration.cfm

@EMEUNET
@eularPAED
@eularHPR

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; 3TR-IMI @3TR_IMI ·

10 May 1524022102952751104

📢 #Lupus is one of the 7⃣ diseases being researched in #3TR and specifically one of 3⃣ #autoimmune diseases within the project. Today, on 🌎 #WorldLupusDay, we want to draw attention to researchers and doctors working with lupus, as well as patients affected by the disease❗️ 👇 https://twitter.com/LupusEurope/status/1523913785194516481

Lupus Europe @LupusEurope

Today is #WorldLupusDay!
Watch as Prof. Mosca & Jeanette Andersen, our Chair, discuss #lupus, the patient perspective, how patients can contribute to #research & much more! #MakeLupusVisible https://youtu.be/XpBEt0mA32k
cc @ern_reconnet

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; Laurent ARNAUD @Lupusreference ·

13h 1526808272472363009

🆕 We asked doctors and #SLE patients 🏥 separately what they think are the most important disruption points 💥 in #lupus patient pathways...well it's really interesting ⬇️ and we CAN DO MUCH BETTER 👍
Check the full paper (free openaccess 🔓) at: https://lupus.bmj.com/content/lupusscimed/9/1/e000700.full.pdf

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; ERN ReCONNET 🇪🇺 @ern_reconnet ·

16 May 1526079525951574017

Free openaccess paper: "Improving #patient #pathways for systemic #lupus erythematosus: a multistakeholder pathway optimisation study"
#SLE #SystemicLupusErythematosus https://twitter.com/Lupusreference/status/1526075413260279810

Laurent ARNAUD @Lupusreference

🆕 Check our latest paper: "Improving #patient #pathways for systemic #lupus": we asked 🔎 SLE patients and various doctors (GPs, specialists, public/private...) about the MAIN DISRUPTION POINTS in lupus care. It was VERY INFORMATIVE👍
📥FREE openaccess at:http://dx.doi.org/10.1136/lupus-2022-000700

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; Lupus Europe @LupusEurope ·

17 May 1526613591557869568

Every year, on May 20th, we commemorate World #AiArthritisDay.
Join us on this event and DRIVE awareness for these conditions that, like #lupus, affect the lives of 450 million people in the world.
Please visit @AIArthritisDay for more information

WorldAiArthritisDay @AIArthritisDay

Get your engines started! Join us for World #AiArthritisDay this Friday, May 20th!

@behcets_usa @ArthritisNetwrk @CureArthritis @ArthritisNZ @AARDATweets @spondylitisCA @CreakyJoints @GHLForg @ndb_org @StopSarcoidosis @Looms4Lupus @LADAOrg @LupusEurope @LUPUSUK @NASSexercise

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; Laurent ARNAUD @Lupusreference ·

17 May 1526438902478917632

✅ May is #lupusawareness month
Let's (re)view the various types of #lupus: systemic (#SLE), cutaneous (CLE), neonatal (anti-SSA antibodies going through the placenta), and drug-induced lupus. ⚠️ Some disease names "contain" the word lupus but are not: lupus pernio & vulgaris.

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; Lupus Europe @LupusEurope ·

16 May 1526273532891643912

Potencially interesting for #lupus patients as the objectives of the session at #EULAR2022 will be
-The use of glucocorticoids in #SLE & strategies to minimize their use
-When it is possible to withdraw steroids
- Evaluate therapeutic options in difficult to treat SLE

EULAR @eular_org

📢 Attend the #EULAR2022 Scientific session:
👨‍⚕️ Clinical challenges in SLE
👉 Learning objectives https://bit.ly/38IczNF
🔔 Accessible on #EULAR2022ondemand until 31 July
⭐ Register https://congress.eular.org/registration.cfm
@EMEUNET
@eularPAED
@eularHPR

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; Lupus Europe @LupusEurope ·

16 May 1526267724015489025

SLE is a chronic systemic autoimmune disease that can affect many organs, including the skin, lung, kidney, heart, brain & joints, with different grades of severity. There exist a range of coping strategies lupus patients may uses to deal with the impact #SLE has on their lives.

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; Laurent ARNAUD @Lupusreference ·

16 May 1526075413260279810

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; EULAR Young PARE @eularYoungPARE ·

9 May 1523592482730254336

📣 Join us in #YoungPAREwebinar "Coping with a diagnosis – Accepting your diagnosis can make you stronger"!

📅 19 May 2022, 20:00 - 21:00 CEST

Register / Login to attend 👉 https://bit.ly/3s8poaV

#eularPARE #EULAR #YoungPARE #rheumatology #FightingRMDsTogether #rheuma

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; Laurent ARNAUD @Lupusreference ·

15 May 1525746388776144896

✅ May is #lupusawareness month
Let's (re)view the DORIS definition of #remission ⬇️ for #Lupus (from this: http://dx.doi.org/10.1136/lupus-2021-000538)
- No clinical disease activity
- Physician assessment of disease activity <0.5 (0-3 scale)
- Max 5mg/day predniso(lo)ne
- Stable immunosuppressive

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; Laurent ARNAUD @Lupusreference ·

14 May 1525431604444901376

🆒 Are you curious to know how to use #twitter to educate, perform #research, engage patients & build meaningful collaborations? Don't miss my @EMEUNET invited talk about #socialmedia & #rheumatology at #EULAR22, the 1st of June 2022 at 14:15 (Auditorium 10) 👍

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; Laurent ARNAUD @Lupusreference ·

14 May 1525373774962606082

✅ May is #lupusawareness month
Let (re)view ⬇️ the many #skin manifestations of cutaneous #Lupus. The former classification into acute / subacute / chronic CLE remains but many new specific involvements have been described over the past years.

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; Laurent ARNAUD @Lupusreference ·

13 May 1525156739934474240

Oh woaw, thank you @LupusEurope for quoting our paper 😍 about long term outcomes in #Lupus ⬇️ https://twitter.com/LupusEurope/status/1525094899573575682

Lupus Europe @LupusEurope

Therefore, "good control of disease activity, minimization of glucocorticoids exposure and lifestyle optimization are of great importance" for #lupus patients https://academic.oup.com/rheumatology/article/59/Supplement_5/v29/6024730

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; Lupus Europe @LupusEurope ·

13 May 1525094897136574464

According to this study by @Lupusreference et al., "patients with #SLE have 2- to 10-fold increased risk of clinical CVD compared with the general population".
#LupusAwarenessMonth

Laurent ARNAUD @Lupusreference

✅ May is #lupusawareness month
Let (re)view ⬇️ the main determinants of #cardiovascular risk in #Lupus 🔎

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; Lupus Europe @LupusEurope ·

13 May 1525004923460632577

Our chair, Jeanette Andersen, will be the leader of the #StenePrize2022 jury. The competition gives #RMD patients the opportunity to share their experience of living with an RMD.
Be an inspiration to other #lupus patients and physicians. Participate in 2023 Edgar Stene Prize

EULAR @eular_org

📣 We look forward to hosting you at the #EULAR2022 opening plenary in which we will award the #StenePrize2022.

Register to attend 👉 https://congress.eular.org/registration.cfm

@EMEUNET
@eularPAED

#EULAR #Rheumatology #rheuma

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; Lupus Europe @LupusEurope ·

13 May 1524997874102190080

20% of patients with lupus are below their 20's.
Although it is rare for a child to develop #lupus before 5 years of age, children can also have lupus. Therefore this session chaired by prof. @TadejAvcin & prof. Maya H Buch might be of interest for patients/caregivers #EULAR2022

EULAR PAED - Paediatric Rheumatology @eularPAED

📢 Mark your calendar! Get the highlights from the #EULAR2022 sessions on Paediatric Rheumatology:

👉 Scientific programme https://bit.ly/3LRMp9m

🔔 Accessible on #EULAR2022ondemand until 31 July
⭐ Register now https://congress.eular.org/registration.cfm
@eular_org
@EMEUNET
@eularHPR
#eularPAED

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; Lupus Europe @LupusEurope ·

12 May 1524823978795225092

Patients have evolved from passive subjects to active contributors in the field of medicine. Learn the relevance of the involvement of patients and how you can get involved attending this #EULAR2022 session chaired by @SjogrenpowerAna and Dr. Maarten de Wit

EULAR @eular_org

📢 Attend the #EULAR2022 Scientific session:
👨‍⚕️ Enhancing research through patient involvement
👉 Learning objectives https://bit.ly/37KFyA0

🔔 Accessible on #EULAR2022ondemand until 31 July
⭐ Register now https://congress.eular.org/registration.cfm

@EMEUNET
@eularHPR
@eularPAED
@eularYoungPARE

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; Lupus Europe @LupusEurope ·

12 May 1524729106528677890

Studies suggest that up to 25% of #SLE patients have #fibromyalgia too, a chronic condition that causes widespread pain, esp. in tender points. In 2017 @eular_org published recommendations for the management of fibromyalgia
#FibromyalgiaAwarenessDay

EULAR revised recommendations for the management of fibromyalgia

Objective The original European League Against Rheumatism recommendations for managing fibromyalgia assessed evidence up t...

buff.ly

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; Lupus Europe @LupusEurope ·

12 May 1524709624347348992

Every 12th May the world commemorates #InternationalNursesDay, a figure that can play an important role in patient education, and #lupus management. We would like to thank all nurses in Europe for their dedication, care and hard work.

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LUPUS EUROPE

2 days ago

SLE is a chronic systemic autoimmune disease that can affect many organs, including the skin, lung, kidney, heart, brain and joints, with different grades of severity. There exists a range of coping strategies lupus patients may use to deal with the impact SLE has on their lives.

Alain Cornet, Davide Mazzoni, Angela Edwards, Dario Monzani, Gabriella Pravettoni, Jeanette Andersen and Prof. Marta Mosca analysed data from the "Living with Lupus in 2020" survey and were able to identify the most frequent words used by patients to describe their coping strategies, grouping them into significant themes. Five themes, corresponding to as many coping strategies, were identified and all strategies were quite important for patients.

The study's authors were also able to test the possible association between these themes and some patient characteristics. The results of this study have strong implications for clinical practice and for interventions aimed at improving patients' quality of life.

Read the full research by clicking on the link below:

lupus.bmj.com/content/9/1/e000656 ... See MoreSee Less

Coping with systemic lupus erythematosus in patients’ words

lupus.bmj.com

Objective Previous research on coping strategies of patients with SLE showed that there are no absolute adaptive or maladaptive strategies and that the range of potential coping strategies is large an...

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LUPUS EUROPE

5 days ago

As much as we love hearing from you all and appreciate the time you take to share how you #kicklupus and inspire others, we cannot allow any content specifically about healing products for lupus.

We would greatly appreciate if you followed this rule when posting on the page.
Thank you ... See MoreSee Less

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LUPUS EUROPE

1 week ago

#WorldLupusDay finishes today, but #lupusawareness does not. There is so much more we can do to make life with #lupus better. Watch our vice chair, Anne Charlet, talk about her journey of becoming a Board Member.
You can also join us and become a volunteer ... See MoreSee Less

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Wauvvvv SO good looking :-)

LUPUS EUROPE

1 week ago

On this #WorldLupusDay, we invite you to read this article written by our chair, Jeanette Andersen, Dr. Susan Manzi, Prof. Marta Mosca and Oatrick Wildman from Lupus Foundation of America.

As we mark #lupusawarenessmonth, and world lupus day, we want the global lupus community to join us in advocating for a better future for people living with lupus.

We need to define the standard of care that people living with #lupus deserve, which tackles the challenges across the patient pathway. Because, despite differences in care worldwide, the core challenges facing people living with lupus remain the same.

www.politico.eu/sponsored-content/a-call-to-action-setting-the-future-care-principles-for-people-... ... See MoreSee Less

A call to action: setting the future care principles for people living with Systemic Lupus Erythematosus

www.politico.eu

Lupus Awareness Month 2022: Advocates for the 5 million people worldwide living with this often-debilitating autoimmune disease set the bar for quality care and better futures for patients.

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This all sounds great. One of the hardest things I have to deal with is specialist doctors thinking box standard treatment fits everyone. No one recognises there are levels of SLE and wanting to put one on daily meds & steroids just in case frankly is not acceptable. The side effects cause worse issues often than the disease & without testing and clear diagnosis every symptom is put down to Lupus and not side effects of drugs developed not for lupus from decades ago. This to me & others is an ongoing battle 💜 Thus protect your organ mantra needs to stop the drug I was put on has done far more harm than my lupus ever will 😞

LUPUS EUROPE Uniting people with Lupus throughout Europe

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Alain Cornet

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