;
This is such a great #lupus100 question that many patients have.
Getting to know your #lupus is key to have the answer, although all of us encounter situations in which we are not sure. In case of doubt, remember to always consult your physician and never self-medicate!
@LupusEurope @ern_reconnet I remember asking, if I'm going to feel bad pretty much all the time, how will I ever know that I'm sick/ill with another ailment, vs my symptoms just being Lupus?
Still not sure I have an answer for that and Lupus has lived with me almost 10 years now...🤔
-What to expect from treatment/disease
-What exactly our treatments do
-How to recognize/document symptoms
-What we can do in between visits
This should be an ongoing convo and not just one time, especially when we're overwhelmed from just having been diagnosed. #Lupus100 https://twitter.com/LupusEurope/status/1573024815681884163
Patients can forget asking certain questions,especially the day they are diagnosed,due to the shock of knowing they have lupus. What is the question you should have asked that you didn't?
Physicians:what is the most important question we should ask when being diagnosed? #Lupus100
Chronic conditions like #lupus are a worldwide concern affecting individuals, their loved ones & society at large.
At LUPUS EUROPE we strive to make life with lupus better. That’s why we have partnered with THIS IS LIVING. Do you want to know more? Visit https://buff.ly/3qIU6Gw
Proliferative lupus nephritis progresses to end-stage kidney disease in roughly 10% of the cases despite treatment. Persistent isolated C3 hypocomplementemia could be a strong predictor of end-stage kidney disease, according to this study in @KIReports
Persistent isolated C3 hypocomplementemia as a strong predictor of end-stage kidney disease in lupus nephritis
Proliferative lupus nephritis (LN) progresses to end-stage kidney disease (ESKD) in roughly 10% of the cases despite ...
buff.ly
🎧 Listen to the latest #eularPARE #Podcast! "How to create a programme for #patient education after #diagnosis"
🌍 Learn about a programme called “Know Your Lupus” and how this has helped patients manage their disease
👉https://spoti.fi/38w8qwg
👉https://apple.co/3a7HWll
#EULAR
✅ You can now download 📥
THE #LUPUS WHITE BOOK
by @SLEuroSociety
(obviously for free...)
At the following link: https://d10qmes3r0zm40.cloudfront.net/sleuro/wp-content/uploads/2022/09/27162222/Lupus-White-Book.pdf
✅ Immensely proud to present the first edition of @SLEuroSociety #LUPUS WHITE BOOK.
With an amazing team of experts, we have reviewed the most contemporary challenges in the field of #SLE
You can register to know more at https://sleuro.org/lupus-white-book
https://m.youtube.com/watch?v=vDYTiPZPYeI
What if you fall ill while in another 🇪🇺 Country?
With the European #HealthData Space a local doctor could see your medical history in his own language. But never without your permission.
#EHDS aims to ensure high-quality care to EU citizens at all times.
#HealthUnion
Genetic background in the childhood #SLE #cSLE pathogenesis is important. An interesting study on genetical and phenotypical findings of childhood-onset systemic #lupus erythematosus by Morán Álvarez et al. will also be presented at #lupus2022.
See you all in Copenhagen!
✅ This morning at Objectif-H, the French school for young #rheumatologists, we're talking about the complex world of scientific #publication. From the initial scientific idea to the final publication through #grant searching and successful reviewing the full path is tough!
🆕 article published in @FrontiersIn Medicine
"An overlook on the current #registries for rare and complex connective tissue diseases and the future scenario of #TogethERN ReCONNET"
https://www.frontiersin.org/articles/10.3389/fmed.2022.889997/full
#EuropeanReferenceNetworks
ERN ReCONNET. More than a Network.
Nearly there!!!
What will be the first question you will ask?
#Lupus100
The “Living with lupus in 2020” survey has highlighted the need for change in access for #lupus patients. That is why we chose "Access" as the theme of our 2022 #LupusConvention. You can read the full convention report here https://buff.ly/3SfYCIn
🔔 BIG NEWS: the 13th European Lupus Meeting has been accredited by the
European Accreditation Council for Continuing Medical Education (EACCME) with 17 European CME credits.
See you soon in Stockholm, 5-8 Oct to improve your knowledge! https://bit.ly/3BEBImU
#SLEuro #lupus2022
✅ Question to #nephrology & #rheumatology colleagues taking care of #lupus #nephritis ➡️ what is your INITIAL (oral) glucocorticoid dose for the treatment of #proliferative #LN? (Following m-pred infusions)
New content online! Paediatric glucocorticoid toxicity index: new possibilities in assessment http://dlvr.it/SYpFhv
✅ Interesting summary of our recent paper on #Lupus #Fatigue by the @RheumatologyNet ⬇️
https://doi.org/10.1136/rmdopen-2022-002395 https://twitter.com/RheumatologyNet/status/1572647013061398528
#Fatigue, a highly multifactorial manifestation of #lupus, can be related to disease activity or independent of the disease itself. Investigators determined whether fatigue could be a significant confounder of Physician Global Assessment ratings.
http://ow.ly/qSJR50KPszL
Patients from the Systemic Lupus International Collaborating Clinics cohort were serially assessed with different measures of remission in this cohort study. Showed that remission and low disease activity are associated with less damage accrual over time. https://bit.ly/3TSmxz3
3. A field day
ERN ReCONNET Systemic #Lupus Erythematosus Group Kick-off meeting with the Disease Coordinator @MaartenLimper and ePAGs Jeanette Andersen & Alain Cornet.
Seventh of ten #KoM, wheigh anchor!
https://reconnet.ern-net.eu/disease-sle/ #SLE
#ERNReCONNET. More than a Network.
T2T is a well know approach used by physicians worldwide that consists of:
1️⃣ Establishment of the target to achieve, usually LLDAS & remission
2️⃣ Take the necessary steps to achieve it.
3️⃣ Asses and monitor the achievement.
4️⃣ Change/adjust treatment if not achieved.
#lupus2022
Low levels of ECR1 in early or mid-pregnancy are predictive of an adverse pregnancy outcomes in systemic lupus erythematosus. Therefore, screening for ECR1 and EC4d early in pregnancy may identify patients with increased risk of serious pregnancy complications.
Despite the limitations that the authours acknowledge in this study, the findings will make possible to identify high risk patients and consider a closer management and reinforce the recommended preventive measures.
lupus.bmj.com
Background Complement activation has been associated with adverse pregnancy outcomes (APO) in SLE. Pregnant women with SLE were studied to evaluate whether complement dysregulation within the first tw...
Patients can forget asking certain questions, especially the day they are diagnosed, due to the shock of knowing they have #lupus.
What is the question you should have asked and you didn't?
What is the question you think physicians should answer without being asked?
#Lupus100. With the collaboration of ERN RECONNET, Katana Santé and Fai2r.
Qu'es le lupus ? Moi j'ai eu a " c'est un lupus...comme votre grand mère" point final Je me suis imaginer ,mes mains se déformer,me paralyser j'ai eu peur maintenant 7 ans plus tard bien-sûr chez changer d'internet me suis tourné vers un rhumatologue et centre des douleurs un nouveau immunosuppresseurs mais pas d'explication sur les effets secondaires a part pour le foie ... suspens es ce que mon corps va accepte ce médicament
Recording your appointment helps
Medication side effects short and long twem
More good news for the #lupus commnunity!!
Voclosporin has been approved in Europe for the treatment of adults with active lupus nephritis in combination with a background immunosuppressive therapy regimen.
ir.auriniapharma.com/press-releases/detail/263/aurinia-announces-european-commission-approval-of
Date is set! And #Lupus100 is fast approaching.
If you haven't done yet, subscribe to our newsletter to get the latest updates!
www.lupus-europe.org/me-lupus/lupus-europe-info-centre/
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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Dalila TremariasBoard Member
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Annemarie SluijmersVice-Chair, Secretary
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Elfriede WijsmaVice-Chair, Treasurer
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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.
With the financial hardship faced by our members, we have decided to minimise membership fees and contributions, and not to seek funding from individuals or national organisations in members countries. As a result, in 2021, 97.5% 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 20% of its fund to come from one partner. In 2021, the highest contribution from a single company was reached by Roche with a total of 11.3% of total funds raised.
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.
