;
Urgent Reminder: The #NotJustMySkin campaign wraps up on April 19th. Join us in advocating for the prioritization of skin health by signing the open letter at http://notjustmyskin.org. Show your support & help spread the word by sharing this post. #ActNow #SkinHealthAwareness
🚨 Calling all lupologists!
✅ Kindly share our Living With Lupus survey and help us get as many responses as possible.
🇪🇺 Available in 21 languages!
https://buff.ly/3VZLsEc
✅ Just 3 more days before the 4th @SLEuroSociety Advanced #Workshop for #Lupus of Porto (19-20 April) and I'm happy to share my recap slide about antinuclear antibodies (#ANA) in #SLE 📝 We're going to discuss atypical lupus cases...so it's good to know what is typical first 👍
Part 2 of our #LupusNephritis case-based modules reviews treatment guidelines for #lupus nephritis and the prevention of chronic #kidneyDisease, with expertise from @ykoteng_LUMC and Luis Quintana: http://lupusCME.org #RheumTwitter #rheumatology #SLE #kidney #CME #autoimmune
Our Board & extended Board met last week for 2️⃣ full➕exciting days of work on the strategic plan. Lots of exciting plans in the pipeline🤩!
We also hosted an Industry Roundtable, bringing together our Industry Partners to talk about our work.
More on that 🔜 in the newsletter!
Desde Lupus España ( @Felupus ) 🙏 os pedimos 🙏 vuestra colaboración para difundir y rellenar esta encuesta para pacientes “SWISS KNIFE SURVEY” de @LupusEurope en Español 🇪🇸
Enlace https://www.surveylegend.com/s/5h8u
⏳️En 15 minutos tu voz y realidad será trasladada y ➕️ visible❗️
✍🏻Попълнете анкетата.
🔊Споделете с вашата общност.
👨🏼⚕Ако сте здравен специалист и лекувате пациенти с лупус в Европа, ще сме много благодарни, ако информирате вашите пациенти.
https://s.surveylegend.com/-NuOC4mQDrt8udTrqS85
Hello lupologists!
A SLESIS-R >6 = likelihood ratio of 5.5 to develop an infection in the next year.
SLESIS-R: an improved score for prediction of serious infection in patients with systemic lupus erythematosus based on the RELESSER prospective cohort https://lupus.bmj.com/content/11/1/e001096
Tässä Lupus Europen kysely, vastauksia toivotaan myös miehiltä. Vastausaikaa on tiistaihin 30.4. asti
s.surveylegend.com/-NrB_0Hf4Z-ZAZH55K7U
0 CommentsComment on Facebook
Drogie Motylki, 🦋🥰
mamy do Was prośbę o wypełnienie ankiety LUPUS EUROPE.
👉 www.surveylegend.com/s/5h8u
👉 www.surveylegend.com/s/5h8u
👉 www.surveylegend.com/s/5h8u
Udział w tego typu ankietach ma wpływ na badania, zatwierdzenie leków, praktyki lekarskie oraz na publikacje naukowe wyników, które są cytowane w różnych artykułach w czasopismach medycznych.
Dzięki poprzedniej dużej ankiecie powstał lupus100.org
Dlatego bardzo prosimy o poświęcenie kilku minut na wypełnienie ankiety. Dzięki temu, mamy wpływ na to, co dla nas jest najważniejsze.
👉 www.surveylegend.com/s/5h8u
👉 www.surveylegend.com/s/5h8u
👉 www.surveylegend.com/s/5h8u
#lupuspoland #lupuseurope #ankieta #toczeń #sle
0 CommentsComment on Facebook
LUPUS EUROPE is conducting a survey to gather insights into the experiences of individuals living with #lupus across Europe.
🌍 In 2020, Lupus Europe launched a large “Living with lupus survey”. Thanks to the huge participation from patients around Europe, the insights from this survey are largely used. Time has now come for a new survey, with different topics, to add to our knowledge of what it means to live with lupus in 2024.
👤 The survey is anonymous and should take approximately 10 minutes to complete. It is available in 19 different languages.
🔗 Click the following link to complete the survey: www.surveylegend.com/s/5h8u
Thank you for sharing your views!
#LupusAwareness #LupusResearch #SLE #LupusCommunity
0 CommentsComment on Facebook
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 five 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.
-
Jeanette AndersenChair
-
Dalila TremariasBoard Member
-
Annemarie SluijmersVice-Chair, Secretary
-
Elfriede WijsmaVice-Chair, Treasurer
-
Amy SomersBoard Member
-
Aldevina SturienėBoard Member
-
Alain CornetSecretariat
-
Zoe Karakikla-MitsakouProject Manager
-
Sara BadrehPAN Coordinator
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:
-
-
- 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
-
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
-
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
-
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.
-
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 6 countries are associate members.
