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✅ Did you participate 🏥 to the #LUPUS Expert System for the Assessment of #Fatigue (#LEAF🍃) Study? If so, we would like to thank you very much 🙏 you can check 🔎 the full results of 1250 participants with #SLE using the following link: https://doi.org/10.1136/rmdopen-2023-003476
👨⚕️According to @AnisurRahman60 et al., adherence is the extent to which a person's behaviour corresponds with agreed recommendations from the health care provider.
⚠️Problems with treatment adherence may influence clinical outcomes in #SLE.
https://academic.oup.com/rheumatology/article/46/6/895/2899469
#KickLupus
👉🏻A crucial work done by @IoannisParodis et al. on reframing health disparities in SLE, offering a critical reassessment of racial and ethnic variations in lupus disease and outcomes.
Don’t miss out on this important read!:
🔓 @best_rheum #OpenAccess
-1⃣ week to go to our 🆕 interesting #webinar on anti-nuclear antibodies w Dr @MassimoRadin n Dr @piantoni_silvia!
🙌 don't miss it, #registration is OPEN
⚙️ For more info on #UTCD: http://bit.ly/3R6TdEe
✅ Very happy to report that the #LEAF paper has just been PUBLISHED ⬇️ Together with @LouKawka and amazing experts, we have been working on a #digital solution to IMPROVE #FATIGUE in #LUPUS. Thanks to @LupusEurope and to all participants 🙏 Free download
From Hieronymus to Kaposi, from identifying targets to naming therapies: a whole journey to CAR T Therapy in #lupus by Prof Vital. Happy to have hosted this wonderful webinar, together with @AmySomers84. Don’t miss the recording that will be available on @LupusEurope channels💚💜
💫Join tomorrow our EULAR PARE Medical Webinar : "Biomarkers - what are they and how can they be useful in rheumatology?"
💻7 December, 16:00 CET
Speaker:
🗣️Prof. Chris Edwards, Consultant Rheumatologist and Co-Director of NIHR.
Learn more here 👉 https://pulse.ly/91obehzcbu
😃Yes! This month's theme is adherence!
💎Adherence is one of the cornerstones of🔝 #lupus management, which requires a comprehensive & multifaceted approach to address the diverse aspects of the disease.
💪A significant part of the journey to #KickLupus lies within our grasp
⁉️Do you find treatment adherence tricky?
😃 Learn more about how it can help you #KickLupus!
📹 Watch this session of our 20221 Convention in which Dr Arvind Kaul explains how key #lupus drugs work and gives us tips & tricks to make adherence easier!
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😃 Yes! The theme for this month is adherence!
💎 Adherence is one of the cornerstones of good #lupus management, which requires a comprehensive and multifaceted approach to address the diverse aspects of this chronic autoimmune disease.
Here are the key components of a holistic management strategy:
1️⃣ 𝗔𝗱𝗵𝗲𝗿𝗲𝗻𝗰𝗲
2️⃣ 𝗥𝗲𝗴𝘂𝗹𝗮𝗿 𝗺𝗲𝗱𝗶𝗰𝗮𝗹 𝗺𝗼𝗻𝗶𝘁𝗼𝗿𝗶𝗻𝗴
- Routine check-ups: Regular visits to rheumatologists and other specialists for ongoing assessment of disease activity and adjustments to treatment plans.
- Lab tests: Monitoring blood work, medication levels, and disease markers. These are personalised to you; if you have questions about any of your tests, we would encourage you to talk to your medical team!
3️⃣ 𝗟𝗶𝗳𝗲𝘀𝘁𝘆𝗹𝗲 𝗺𝗼𝗱𝗶𝗳𝗶𝗰𝗮𝘁𝗶𝗼𝗻𝘀
- Healthy diet: Emphasizing a balanced diet rich in fruits, vegetables, and omega-3 fatty acids to support overall health.
- Regular exercise: Low-impact activities to maintain joint flexibility, muscle strength, and cardiovascular health.
- Stress management: Techniques such as meditation, yoga, or counselling to cope with stress, a potential trigger for lupus flares.
- Adequate Sleep: Prioritising restorative sleep to support immune function and overall well-being.
- No smoking.
4️⃣ 𝗨𝗩 𝗽𝗿𝗼𝘁𝗲𝗰𝘁𝗶𝗼𝗻:
- UV Exposure Awareness: Limiting exposure to sunlight, a known trigger for lupus flares.
- Sunscreen: Using broad-spectrum sunscreens with high SPF, protective clothing, and accessories when outdoors.
5️⃣ 𝗣𝗮𝗶𝗻 𝗮𝗻𝗱 𝘀𝘆𝗺𝗽𝘁𝗼𝗺 𝗺𝗮𝗻𝗮𝗴𝗲𝗺𝗲𝗻𝘁, including physical therapy➡️ tailored exercises to improve joint function and reduce pain.
6️⃣ 𝗣𝗮𝘁𝗶𝗲𝗻𝘁 𝗘𝗱𝘂𝗰𝗮𝘁𝗶𝗼𝗻 𝗮𝗻𝗱 𝗲𝗺𝗽𝗼𝘄𝗲𝗿𝗺𝗲𝗻𝘁:
- Understanding lupus: Providing education about the disease, its symptoms, and potential triggers.
- Self-monitoring: Encouraging individuals to recognise early signs of flares and communicate effectively with healthcare providers.
- Support groups: Connecting with others facing similar challenges to share experiences and strategies.
7️⃣ 𝗣𝘀𝘆𝗰𝗵𝗼𝘀𝗼𝗰𝗶𝗮𝗹 𝗦𝘂𝗽𝗽𝗼𝗿𝘁.
- Counseling or therapy: As and if needed to help address the emotional impact of living with a chronic illness.
- Support networks: Building a strong support system of friends, family, and healthcare professionals.
8️⃣ 𝗩𝗮𝗰𝗰𝗶𝗻𝗮𝘁𝗶𝗼𝗻.
9️⃣ 𝗜𝗻𝗱𝗶𝘃𝗶𝗱𝘂𝗮𝗹𝗶𝘀𝗲𝗱 𝘁𝗿𝗲𝗮𝘁𝗺𝗲𝗻𝘁 𝗽𝗹𝗮𝗻𝘀 𝘄𝗶𝘁𝗵 𝘀𝗵𝗮𝗿𝗲𝗱 𝗱𝗲𝗰𝗶𝘀𝗶𝗼𝗻-𝗺𝗮𝗸𝗶𝗻𝗴.
🙌 By integrating these approaches, patients can potentially #kicklupus by better managing their symptoms, reducing flares, and improving their overall quality of life.
👨⚕️ Regular communication with healthcare providers is crucial to ensuring that the management plan remains effective and adaptable to the dynamic nature of lupus.
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🌺Thank you for your active participation & enthusiasm!
We hope that Prof. Ed Vital has provided you with valuable knowledge & that you thoroughly enjoyed the webinar 😊.
For more information about lupus, visit #Lupus100!
www.lupus100.org
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9 CommentsComment on Facebook
Thank you for sharing that with us Lovella 🙂. It's lovely to see you here and hoping you're finding the webinar very interesting!
Hello and thank you for joining us for this fascinating webinar! If you have any questions at all, feel free to ask them here and we will ensure they are raised during the webinar! 🙂
As always from Lupus Europe community - a very well organized event with a great presentation - THANKS for the opportunity - thanks Professor sharing your interesting thoughts! Congrats and as always fingers crossed!
Thank you so much for sharing this webinar. This is so interesting. Unfortunately, I have to leave for an appointment. Is there any way to watch the rest of this webinar on a later moment?
Hi, my name is Manon, I'm using my husbands account. Mr. Vital says this medicine is safe. But how big is the chance on CRS?
Read on Twitter that there have been side effects
Are there any side effects of this therapy as has been raised by some on Twitter ?
Hi, I was diagnosed w Lupus 2020 then had a dvt last 2022 & turned out APS last mar2023. I have been trying to learn/understand of both diseases.
Thank you, professor!
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 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.
