Latest blogs
Latest Videos
;
✅ There is a lot of interest around #hydroxychloroquine & #Lupus so I think it's worth showing our recent review ⬇️ with @drALINAdima @CiprianJurcut @FChasset & @DocFelten.
In just a few months we've had >10 000 downloads 📥 #Rheumtwitter #EULAR2023
📢It's time to mark your calendars and save the date for the #EULAR2023 Press Conference!
✨ Discover the latest advancements and breakthroughs in the field of rheumatology.
🙋♀️If you want to attend, register here!
👉https://congress.eular.org/press_registration_form.cfm
Our expert discussion, led by Ricard Cervera, is now on the @lupus_hub
Watch our steering committee discuss:
Deucravacitinib: How might it fit into the treatment pathway for patients with #SLE?
👉 https://loom.ly/uqyOkKQ #lupus
✅ #LupusAwarenessMonth
In #lupus, current data suggest that there is a trade-off between the benefits and risks of #hydroxychloroquine:
➡️ HIGHER dose of HCQ (>5mg/kg/day): LESS (risk of) flare & MORE retinopathy
➡️ LOWER dose of HCQ (<=5mg/kg/day): MORE flare & LESS retinopathy
🏆 The #EULAR Edgar Stene Prize will be awarded at the Opening Plenary at #EULAR2023 to the person submitting the best essay describing their individual experience of living with an RMD.
Learn more 👉 https://pulse.ly/m6ix8244hz
Register to EULAR 2023 👉 https://pulse.ly/3kfhbwb9b4
. @eular_org is around the corner!
At Lupus Europe, everything is ready to make the most out of one of the 🔝 events of the year, and our Board & PAN members will be covering all the #lupus sessions.
If you are attending, don't forget to visit our booth!
#EULAR2023
DoM Virtual Seminar: ‘What are the main 2023 Challenges in Systemic Lupus Erythematosus?’ Professor Laurent Arnaud, 8 June, 1:00pm
✅ LupusAwarenessMonth
Discover the main clusters of #Fatigue in systemic #Lupus
➡️ Cluster 1: no or little disease activity. No major fatigue
➡️ Cluster 2: no or little disease activity. VERY HIGH fatigue, stress, anxiety
➡️ Cluster 3: significant disease activity with fatigue
#EULAR2023 is around the corner!
At Lupus Europe, everything is ready to make the most out of one of the 🔝 events of the year and our Board & PAN members will be covering all the #lupus sessions.
If you haven't done so yet, visit www.lupus100.org and get all the answers to the 100 most frequent questions about lupus!
Check this local doctor out he is a healer to humanity www.facebook.com/profile.php?id=100089686473338
A new newsletter is out!
Don't miss it. Learn more about #Lupus100 and the available languages!
If you don't see your language, consider helping us with the translation! Send an e-mail to zoe@lupus-europe.org.
Happy reading, and don't forget to subscribe to our newsletters by going into our Info Centre section now 😊.
www.lupus-europe.org/emails/lupus-europe-newsletter-100-questions/
Bel progetto realizzato
🇪🇨 Ecuador
Nicaragua
México
Chile
Argentina 🇦🇷🇦🇷🇦🇷🇦🇷
México
México
Guatemala
🇪🇨Ecuador
There are over 100 autoimmune and autoinflammatory diseases as well as conditions that may involve some form of arthritis.
Out of all those conditions, only a few, including some that are rare, involve early-onset inflammation-driven arthritis as a major clinical component.
This type of inflammation-driven arthritis is otherwise known as “autoimmune arthritis" or "autoinflammatory arthritis", depending on the condition it is associated with, or more simply AiArthritis.
Lupus can involve early-onset inflammation-driven arthritis as a major clinical component.
However, as a systemic autoimmune disease, lupus affects more than “just” the joints. Inflammation in SLE can affect the whole body.
Approximately 300 million people worldwide have a diagnosis of an AiArthritis disease.
World AUTOimmune AUTOinflammatory Arthritis Day, also known as #AiArthritisDay, aims to raise awareness of autoimmune and autoinflammatory diseases that can cause joint inflammation.
May 20th is #AiArthritisDay. Join us and DRIVE awareness for these conditions that, like #lupus, affect the lives of so many people around the world.
For more information, you can visit www.aiarthritis.org or follow World AiArthritis Day.
#autoinflammatory #autoimmune #lupus #sle #autoimmunedisease
Second issue of our #lupusconvention summary series!
After the opening of the convention and the announcement of the Yvonne Norton Grant, Elsa Mateus, Co-Chair of EULAR PARE, delivered a session on volunteering.
Volunteering has changed over the years in both definitions and perspectives, and, therefore, patient organisations need to adapt to those changes. It is also key to keep in mind the legal framework in each country.
This talk was really interesting. Elsa showed us PARE's strategy about these changes and the tools they have implemented for an effective volunteering framework in which the legal rights and the well-being of volunteers are taken care of.
We hope this valuable information serves our members!
Stay tuned for more about our 2023 Lupus Convention!
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.
-
Jeanette AndersenChair
-
Annemarie SluijmersVice-Chair, Secretary
-
Elfriede WijsmaVice-Chair, Treasurer
-
Amy SomersBoard Member
-
Dalila TremariasBoard Member
-
Aldevina SturienėBoard Member
-
Ida Daiva PovilaiteBoard 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.
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
-
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.
