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✅ Incorporating patients' perspectives in daily clinical care for #Lupus: 'the how-to guide'
In preparation for @LupusAcademy 2024 ✨ Let's review the main steps for SHARED-DECISION MAKING in #SLE ⬇️ Are you implementing SDM in your practice? Do you use decision aids? Why not?
😃 #Lupus100 is a multilingual website with answers to the 100 most frequent questions about #lupus.
Thanks for recommending it, @ErnerstoCairoli!
Have you tried our latest AI project, #LupusGPT? Also multilingual!
http://www.lupusgpt.org
#EULAR2024 has been a groundbreaking event for Lupus Europe, with an impactful presence that we want to share!
16 of our members, including Board & PAN members, covered🔝 lupus sessions to bring you all the 🗝️ insights. Discover our first-day highlights!
https://buff.ly/4bjwIE1
Game changing for the entire #Lupus community. Thank you @LupusEurope
👏Congrats to our 🦋 SLE ePAG @Jeanette_Lupus - @LupusEurope for this very important @TheLancet
article she co-authored on children born to mothers w #autoimmune rheumatic diseases
📰News http://shorturl.at/mDkS7
⚙️Resources on SLE http://reconnet.ern-net.eu/disease-sle/
🌟 We're excited to invite you to a special webinar where we will dive into the key highlights from the #EULAR2024 Congress, which took place last 12-15th June in Vienna!
🗓️July 11th
⏰19h CET (i. e. Paris time)
✍️ Register! Send an e-mail to secretariat@lupus-europe.org
⭐LupusGPT was announced at #EULAR2024
👉A multilingual AI tool for SLE patients with accurate lupus information
⬇️⬇️⬇️
✅ Very happy to report that we have just completed #SLAKE STEP 4 👍 An amazing group of 69 Healthcare professionals and 22 patient-experts have reviewed the 465 #lupus questions and voted for the most essential ones ✨ We will soon move on to the cross-cultural adaptation 🌍🌎🌏
As we announced last week, Lupus Europe's presence has been robust with six abstracts, six oral presentations, and two in the scientific program.
A total of 16 attendees from our organisation, including Board Members and PAN members, actively participated in the Congress. That means people living with lupus were present in the most important sessions related to lupus.
It has been four days of intensive learning, collaboration, and advocacy. With so much valuable information and so many experiences to share, we will break down some of our insights and learnings in a series of posts.
🌟 First-day highlights from #eular2024!
🎤 𝐎𝐩𝐞𝐧𝐢𝐧𝐠 𝐏𝐥𝐞𝐧𝐚𝐫𝐲 𝐛𝐲 𝐏𝐫𝐨𝐟. 𝐃𝐚𝐧𝐢𝐞𝐥 𝐀𝐥𝐞𝐭𝐚𝐡𝐚
The Congress kicked off with an opening session by EULAR President Prof. Daniel Aletaha, who highlighted the organisation's focus on patient-centeredness, innovation, and inclusivity in managing rheumatic and musculoskeletal diseases (RMDs).
Prof. Aletaha stressed the need for a more substantial integration of patient voices in policymaking and highlighted ongoing initiatives aimed at enhancing patient care across Europe, like the EULAR Manifesto, which was presented at the ceremony.
The open ceremony closed with the award ceremony, recognising outstanding contributions in the field of Rheumatology.
🔬 𝐒𝐜𝐢𝐞𝐧𝐭𝐢𝐟𝐢𝐜 𝐡𝐢𝐠𝐡𝐥𝐢𝐠𝐡𝐭𝐬
1. C̲A̲R̲ T̲-̲C̲e̲l̲l̲ t̲o̲ t̲r̲e̲a̲t̲ R̲M̲D̲s̲ b̲y̲ P̲r̲o̲f̲.̲ D̲r̲.̲ G̲e̲o̲r̲g̲ S̲c̲h̲e̲t̲t̲
Prof. Schett discussed the potential of CAR T-cell therapies in rheumatology. The session covered the principles of CAR T-cell application and its potentially promising future in treating autoimmune diseases like lupus.
2. L̲u̲p̲u̲s̲:̲ W̲h̲a̲t̲'̲s̲ o̲n̲ t̲h̲e̲ h̲o̲r̲i̲z̲o̲n̲?̲
Prof. Dr. Laurent Arnaud masterfully presented an extensive talk on the current and future landscape of lupus management, providing insights from historical perspectives to current treatment strategies and emerging technologies.
He also unveiled one of our newest projects: LupusGPT. LupusGPT is an artificial intelligence tool developed by Lupus Europe, designed to understand and answer patients' questions about lupus in a robust, validated manner using only high-quality, reliable information.
LupusGPT is currently in beta version and will be fully available soon, providing a reliable source of information for lupus patients. In the meantime, you can try it in test version:
www.lupusgpt.org
Suggestions are welcome at secretariat@lupus-europe.org!
🔗 Stay tuned for more updates as we continue to share our experiences and learnings from #eular2024!
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📣 ERN RECONNET is glad to share the recent article published on The Lancet that saw our ePAG representative for Systemic Lupus Erythematous (SLE), 🦋 Jeanette Andersen, co-author of relevant discussion on pregnancy and rheumatology.
💪 Jeanette is highly involved in several Network initiatives, she is one of our Steering Committee Member, an ePAG representative at our Research and Quality of Life Working Group, and an ePGA representative for lupus in our SLE Disease Group, moreover, she is the Chair of LUPUS EUROPE.
⭐ This important article saw as authors also other ERN ReCONNET experts as Prof. Avcin and Prof. Tincani.
🥰 We are very proud of you, Jeanette! 👏 Congrats from all of us for such important achievement!
📰 News: shorturl.at/mDkS7
⚙️ Resources on ERN ReCONNET SLE: reconnet.ern-net.eu/disease-sle/
🤰Details on the ERN ReCONNET resources on pregnancy and rheumatology: bit.ly/3zfnOu7
🇮 Info on ERN ReCONNET Research and Quality of Life Working Group:
reconnet.ern-net.eu/wg-research-and-quality-of-care/
#ERNReCONNET #ERNs #rheumatology #science #knowledge #experts #rarediseasecommunity #socialmedia #ERNReCONNETePAGs #pregnacy #SystemicLupusErythematous #europeanreferencenetwork #ERNReCONNETSLE #europeanreferencenetworks #patient #awareness #rheum #lupus #healthcare #lupusawareness #research #ePAG #TheLancet #scientificarticle
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🌟 We're excited to invite you to a special webinar where we will dive into the key highlights from the European Congress on Rheumatology #eular2024, which took place last 12-15th June in Vienna!
🗓️ Date: July 11th
⏰ Time: 19:00 CET (i. e. Paris time)
✍️ Register now by sending an e-mail to secretariat@lupus-europe.org
0 CommentsComment on Facebook
🌍 Lupus Europe at the 2nd World Congress for Rare Skin Diseases
🚀 We are thrilled to share that our Board Member and ePAG Patient Advocate in ERN-Skin, Annemarie Sluijmers, represented Lupus Europe at the 2nd World Congress for Rare Skin Diseases, held at the Cité Internationale Universitaire de Paris from June 12th-14th and organised by ERN-Skin and the Fondation René Touraine - International Foundation for Dermatology.
😃 This marks the first time Lupus Europe has participated in this prestigious event, where healthcare professionals and researchers strive to find better treatments for those affected by rare and ultra-rare skin diseases.
🤖 One standout session introduced innovative research tools for skin diseases, such as AI for data collection and multi-omics models for primary immunodeficiencies, wearables, in-vitro skin creation, and the complex Human Phenotype Ontology.
💎 A key session highlighted the importance of improving access to diagnostics and treatments, emphasizing Therapeutic Patient Education (www.who.int/europe/publications/i/item/9789289060219).
✅ The congress objectives included:
1. Enhancing understanding of diagnosis, pathophysiology, and management of rare and complex skin disorders.
2. Developing a multidisciplinary approach and improving skills to manage common problems in these conditions.
3. Learning about the latest research findings and tools in skin biology, genetics, and therapeutics.
4. Promoting patient engagement, empowerment, and education programs.
🌟 Lupus Europe remains committed to advocating for the needs of lupus patients with dermatological involvement, striving for better treatments and care.
Thanks, Annemarie, for your dedication and commitment to giving a voice to lupus patients with dermatological involvement.
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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
From 2021 LUPUS EUROPE moved and became a Belgium based non-profit organisation. Our Articles of Association can be found here:
And our constitution can be found here: Constitution 2024
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 for the Board of Directors and our decision making policy.
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 ‘s accounts are audited every year by an independent accountant. To read the independent accountant’s report, follow this link. 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 2022, 76.4% 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 2022, the highest contribution from a single company was reached by Roche with a total of 10.3% 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.
