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
📢 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
📢 #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
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
🆕 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
Free openaccess paper: "Improving #patient #pathways for systemic #lupus erythematosus: a multistakeholder pathway optimisation study"
#SLE #SystemicLupusErythematosus https://twitter.com/Lupusreference/status/1526075413260279810
🆕 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
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
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
✅ 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.
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
📢 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
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.
🆕 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
📣 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
✅ 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
🆒 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) 👍
✅ 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.
Oh woaw, thank you @LupusEurope for quoting our paper 😍 about long term outcomes in #Lupus ⬇️ https://twitter.com/LupusEurope/status/1525094899573575682
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
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
✅ May is #lupusawareness month
Let (re)view ⬇️ the main determinants of #cardiovascular risk in #Lupus 🔎
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
📣 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
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
📢 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
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
📢 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
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
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.
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
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...
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
#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
Wauvvvv SO good looking 🙂
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-...
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.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 😞
ABOUT LUPUS EUROPE
Who are we?
LUPUS EUROPE is the European umbrella organisation that brings together national lupus patient organisations from across Europe. We are a non profit independent organisation. We aim to support and empower our national organisation members, sharing information with them and promoting better patient-centred processes, both within the healthcare field and at a political level. We also work tirelessly to improve access to healthcare for all lupus patients, advocating on their behalf at EU level. We use the WHO (World Health Organisation) definition of Europe as a region, rather than a political entity.
Since our humble beginnings, we have grown to represent most of Europe’s main countries which, in turn, represent over 30,000 patients in their respective memberships. We have observed the gradual shift in position, where formerly patients were often side-lined and not thought to be capable of contributing to their own care, to the current-day-thinking which aims for increasing patient involvement and communication at all levels.
LUPUS EUROPE is now considered a valued partner at medical conferences, in European healthcare organisations fighting for wider patients’ rights, and in Europe-wide initiatives aimed at improving healthcare and setting “standards of care” for lupus patients. We see research and clinical trials as key to the future of lupus patients and work with all stakeholders to improve the quality and efficiency of all lupus research.
LUPUS EUROPE, until 2020 was a UK based charity (803768). From 2021 LUPUS EUROPE moved and became a Belgium based non-profit organisation (0758.650.658).
OUR TEAM
Board of Directors & Secretariat
The LUPUS EUROPE board is composed of seven directors who are all either lupus patients themselves or relatives of a lupus patient. They all work on an entirely voluntary basis. Working alongside them the part-time secretariat ensures administrative support.
In addition to the usual directors, LUPUS EUROPE may call on co-opted advisors for specific projects. Again, all co-opted advisors are volunteers.
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Jeanette AndersenChair
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Marisa CostaBoard Member
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Annemarie SluijmersSecretary
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Anne CharletVice-Chair
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Elfriede WijsmaTreasurer
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Amy SomersBoard Member
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Aldevina SturienėBoard Member
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Alain CornetSecretariat
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Zoe Karakikla-MitsakouProject Manager
ETHICS & GOVERNANCE
The General Assembly is made up of the national delegates who represent their individual countries. The delegate is also very often the international person of contact for that country. The General Assembly meets once a year during the annual LUPUS EUROPE convention. The General Assembly is responsible for tasks such as:
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- nominating qualified people for election to director positions
- electing directors
- setting annual membership subscription rates for both full and associate member organisations
- deciding on amendments to the constitution, on dissolution or on removal of a director
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LUPUS EUROPE applies the EFPIA (European Federation of Pharmaceutical Industries and Associations) Code of Good Practice on relationships between the pharmaceutical industry and patients’ organisations. The same Code of Good Practice will be upheld in relation to any funding received from any other source.
With regards to decision making, we highly value our member’s contributions. Every year, our action plan for the next year is reviewed and discussed with our members as a key element of our general meeting. This is also the audience where we discuss significant “policy” matters, items impacting our vision or strategies. decisions at general assembly are made by Majority vote, as foreseen in our statutes.
During the year, the patient voice is gathered to orient our action in specific projects. this is done through our PAN (PAtient Advisory Network), or through on line consultations and surveys. With regards to decisions on the day to day running of the organistaion, decisions are made by majority vote of the board, as foreseen in our “trustee code of conduct”. Staff members attending board meetings, or board members with a conflict of interest, if any, do not vote on such decisions. If significant changes need to be made to our approved plans, the board consults members by email, social media dedicated network or calls or at the occasion of a webinar.
For more, please also read our code of conduct for volunteers or trustees.
When LUPUS EUROPE was a UK charity, our constitution was approved by the UK Charities Commission; some parts of the constitution were adjusted in November 2017 to ensure we remained on top of external developments and needs.
LUPUS EUROPE CONSTITUTION amended Nov 2017
From 2021 LUPUS EUROPE moved and became a Belgium based non-profit organisation. Our Articles of Association can be found here:
LUPUS EUROPE ‘s accounts are audited every year by an independent accountant.To find our financial report, simply follow this link.
In 2020, 88.6% of the funds raised by LUPUS EUROPE were provided by the pharmaceutical industry. To maintain its independence, Lupus Europe has fixed a ceiling of maximum 25% of its fund to come from one partner. With the development of new sponsors, we expect to structurally bring single sponsor input to no more than 20% by 2022. In 2020, we achieved this objective already as the highest contribution from a single company was reached by GSK with 17.9%.
OUR HISTORY
The story so far
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2021 Headquarters move to Brussels
As Brexit unfolded, we relocated to Brussels, close to many of our partner groups, to ensure an optimal support to all people living with lupus in Europe
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2017 An updated Strategic plan
The convention unanimously adopted LUPUS EUROPE’s revised Strategic plan, including the creation of Pan-European work groups and a Patient Advisory Network. The new structure will allow for more ambitious goals over the next 5 years.
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2015 Establishing a World Lupus Federation
Lupus Europe invited lupus groups from around the world to join its 2015 convention in Vienna, coinciding with the International Congress on lupus, so that a new World Lupus Federation could be created, uniting people with lupus from every continent.
GET INVOLVED
OUR SPONSORS
Our belief is that we need to work alongside pharma, healthcare professionals, academia and other stakeholders in order to achieve our vision. We cannot do this alone.
OUR MEMBERS
The members of LUPUS EUROPE are national and other properly-accredited Lupus Groups in Europe. At this moment 22 countries with 24 organisations representing about 40,000 patients are registered as Full members, and an extra 5 countries are associate members.
