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#EULARAdvocacy echoes the need to strengthen #Rehabilitation services and will do whatever is on our hands. Together we will push for better access and quality of #nursing #physiotherapy #occupationalTherapy #psychology for people with rheumatic diseases
.@AlarcosC explains why rehabilitation services need to be a part of universal health coverage.
She also talks about the landmark resolution on strengthening rehabilitation in health systems during #WHA76.
#Rehabilitation is a set of interventions needed for those who experience or are likely to experience limitations in everyday functioning due to ageing or a health condition, incl chronic diseases or disorders, injuries or traumas http://bit.ly/2xC1qrG
2023 SLE Recommendations
🔹Lower GC dose (5 mg instead of 7.5)
🔹 Early use of biologics for corticosparing
🔹 Cyclophosphamide if life-threatening
🔹 MMF: new in hemato manif
🔹Lupus nephritis: VCL vs BEL???
🔹Maintain trt for 3 years then taper, except HCQ
#EULAR2023
NZ
Did you miss our joint webinar with @ern_reconnet?
Among other things, Prof. @Lupusreference talked about the new @eular_org recommendations for the management of #lupus & the main changes introduced.
Head over to our Facebook page and watch it now! 👉
EULAR 2023 Debrief – for people living with lupus LIVE LINK | LUPUS...
250 views, 7 likes, 2 loves, 20 comments, 3 shares, Facebook Watch Videos from LUPUS EUROPE: LUPUS EUROPE was live.
buff.ly
📢Virtual Seminar today at 1pm with Professor Laurent Arnaud @Lupusreference. Hosted by Professor @AnisurRahman60
DoM Virtual Seminar: ‘What are the main 2023 Challenges in Systemic Lupus Erythematosus?’ Professor Laurent Arnaud, 8 June, 1:00pm https://www.ucl.ac.uk/medicine/events/2023/jun/dom-virtual-seminar-professor-laurent-arnaud
🧵Alert
#EULAR2023
🦋2023 EULAR-Recommendations on the management of lupus
🔥Summary slides
Our joint webinar with @ern_reconnet is also going on Facebook Live!
If you have not been able to register, go to our Facebook Page and enjoy "#EULAR2023 Debrief–for people living with #lupus".
1 hour to go!
https://www.facebook.com/LupusEurope
✅ Checklist for the new #EULAR2023 #Recommendations ✍️ for the treatment of systemic #Lupus, as presented by Boumpas 📺 last week for the taskforce 💪 We have been working VERY HARD to update & improve these reco compared to the previous ones (2019) 👍 #RheumTwitter #MedTwitter
Did you miss our joint webinar with ERN RECONNET?
Among other things, Prof. Laurent Arnaud talked about the new EULAR recommendations for the management of #lupus and the main changes that have been introduced.
Watch it and tell us what you think about them!
Did you know that our Chair, Jeanette Andersen was part of the task force?
😃
EULAR 2023 Debrief – for people living with lupus LIVE LINK
Today is #WORLDAPSDAY, an autoimmune disease that affects 20-30% of people with #lupus.
#APS can cause:
- Excessive blood clotting.
- Certain pregnancy complications.
Pregnancy planning and close monitoring are key to reduce the risk in pregnancy in patients with APS.
#pregnancy #planning #SLE #awareness #APSAwareness
Did you know? We presented 6️⃣ abstracts for #EULAR2023, and all 6️⃣ of them were accepted!
We also...
🙌 Had 2️⃣ oral presentations.
🙌 3️⃣ posters.
🙌 Alain Cornet was one of the abstract award winners.
🙌 Zoe presented in the scientific abstract plenary session.
Watch the interview Dr. Anthony Psarras made with Alain Cornet in Milan!
youtu.be/lLNJmCJ7iqk
Thank you Martijn, for your question! We will ensure your question is raised 🙂
Thank you for following this joint Lupus Europe / ERN ReCONNET webinar! If you have any questions for the speakers, please post them here and we will ensure they are raised! 😃
Hi from Corfu thank you for this it was really helpful!!!
I am curious about diet and microbiome as well. I think the topic is very much understudied and not good understood - but has great influence.
There are huge differences!
Are there possibility’s with food to have remission
There were only young people for the treatment with Car-T cells In am nog young any more. Is ther hope for me?
Only on my phone de zoom started. I do not know why
Metty Staal volgt
What is there to expect the coming years. I mean mean in treatments?
Thank you very much professor Arnoud
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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Annemarie SluijmersVice-Chair, Secretary
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Elfriede WijsmaVice-Chair, Treasurer
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Amy SomersBoard Member
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Dalila TremariasBoard Member
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Aldevina SturienėBoard Member
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Ida Daiva PovilaiteBoard Member
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Alain CornetSecretariat
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Zoe Karakikla-MitsakouProject Manager
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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:
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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 6 countries are associate members.
