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Prof Sousa-Ines in @SLEuroSociety workshop analyses predictors of #lupus flares. New data show anti-U1RNP positivity carries higher risk of flares (including #nephritis especially diagnosed <25years) but achieving remission without #steroids signify lower risk of flares in #SLE.
Prof J Alves summarised lung involvement in patients with #SLE in @SLEuroSociety workshop.
#Serositis (non-infectious with high CRP)
#Pneumonia
#PulmonaryEmbolism
#InterstitialLungDisease
#Pneumonitis
#Vasculitis
#Bronchial involvement
Prof @Lupusreference emphasised the holistic management of #SLE in @SLEuroSociety workshop. Photoprotection, smoking cessation, therapeutic adherence & education, psychological support, physical activity, and management of fatigue are crucial aspects of treating #lupus patients.
NICE have made a recommendation to the NHS that a new treatment, voclosporin, can be used in combination with mycophenolate mofetil (MMF) to treat some patients with #lupusnephritis - https://www.lupusuk.org.uk/nice-recommends-voclosporin-to-treat-lupus-nephritis/
Today is #wordday2023! which stands for WOrld Young Rheumatic Disease Day. Through this global event we can spread the word that children and young people get rheumatic diseases like lupus too.
It is estimated that around 15-20% of lupus patients are children, although it is rare that a child develops lupus before 5 years of age.
As with adult patients, the cause of lupus remains unknown, and there is a great choice of treatments to keep the disease under control.
On average, it takes nearly 6 years for people with lupus to be diagnosed. This delay in diagnosis, and therefore in treatment, can have an impact on the prognosis and quality of life of patients; this includes kids.
The moment your child gets a diagnosis might be overwhelming for you. This feeling of overwhelm can and does go away with time and with access to the right information.
Remember: it is impossible to learn everything about #lupus overnight! Your child's doctor is the best source of information.
Apart from pharmacological treatment, other non-pharmacological measures can also help in lupus management. Take a look at the images we are sharing today to learn about these non-pharmacological measures and share them with your community to help us raise awareness.
Lupus can seem scary at first. Remember that you are not alone and that you are going to do a great job!
Turn to your lupus association for support.
There are many organisations across Europe that can help you and your child cope with the disease.
Look for the one closest to you here 👀 ➡️ buff.ly/3FxMH4p
For more information on #wordday2023 you can visit World Young Rheumatic Diseases Day - WORD Day
🔊 Tomorrow, there will be a new webinar organised by World Young Rheumatic Diseases Day - WORD Day!
➡️ "Tackling inequity in healthcare for children and young people with rheumatic diseases".
📆 18th of March
🕖 19:00 CET (i. e. Paris time)
Register for free here:
us02web.zoom.us/webinar/register/WN_2rD5b_7XTF2Ax4hrGgQDVg
#WORDDAY2023
Lupus can also affect children. That is why we are raising awareness next World yOung Rheumatic Diseases Day, which is the 18th of March.
This year, #WORDDay2023 aims to promote awareness regarding the inequities in education and healthcare for children & young people living with juvenile rheumatic diseases. In line with this, World Young Rheumatic Diseases Day - WORD Day has organised this webinar.
📆 17th March
🕖 19h CET
You can register for free here. The link to the webinar will be sent by e-mail.
us02web.zoom.us/webinar/register/WN_3VxVRVe9SZujpE69cUux0w
If you are a #lupus patient, please take the time to complete this survey. Help the World Lupus Federation and all the organisations around the 🌍 to better understand the challenges and level of access to care for people living with lupus.
The survey is available in several languages!
lupus.qualtrics.com/jfe/form/SV_3COevlIJGl1wztQ
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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Dalila TremariasBoard Member
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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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Aldevina SturienėBoard 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 5 countries are associate members.
