LUPUS EUROPE PARTNERS

LE PARTNERS

LUPUS EUROPE PARTNERS

SLEuro is a voluntary association that promotes scientific research and information with regard to SLE and related syndromes. The Society is building a community of clinicians and researchers interested in SLE at an international level, promoting research and education on SLE as well as equal access to the best standards of care for SLE patients across Europe, and facilitating research projects and clinical trials in SLE.

LUPUS EUROPE is a strong supporter of SLEuro whose goals are fully aligned with LUPUS EUROPE’s vision of “A fulfilling life for all people with lupus in Europe until we have reached a world without lupus”. Over a number of years, we have appreciated the relentless efforts of the academics and researchers at the origin of SLEuro. We cannot thank them enough for their dedication to Lupus Research, the building-up of a dialogue with lupus patient groups, and their every day care for all people living with lupus in  Europe. To all lupus doctors, we say a big THANK YOU, from the depth of our hearts.

EPF: stands for the European Patients Forum. It is an umbrella organisation that represents European patients from all chronic disease areas. They work alongside their members in public health and health advocacy across Europe. Their members represent specific chronic disease groups at EU level or are national coalitions of patients. Their vision is that all patients with chronic and/or lifelong conditions in the EU have access to high quality, patient-centred equitable health and social care. Their mission is to ensure that the patients’ community drives policies and programmes that affect patients’ lives to bring changes empowering them to be equal citizens in the EU. They do this through educational seminars, policy initiatives and projects. LUPUS EUROPE is very involved in the work of EPF and tries to be present in all relevant seminars and projects.

EULAR: stands for European League Against Rheumatism and is a pan European organisation for healthcare professionals, scientific societies and national patient organisations (see PARE), specifically for rheumatic diseases. EULAR’s aim is to reduce the burden of rheumatic diseases on the individual and society and to improve the treatment, prevention and rehabilitation of musculoskeletal diseases.

The EULAR Annual European Congress of Rheumatology is held once a year (usually in June) in alternating major cities around Europe. It is seen as the primary platform for exchange of scientific and clinical information in Europe. It is also a renowned forum for interaction between medical doctors, scientists, people with arthritis/rheumatism, health professionals and representatives of the pharmaceutical industry worldwide. LUPUS EUROPE is always represented.

IAPO: stands for The International Alliance of Patients’ Organizations and is a global alliance representing patients of all nations across all disease areas.

PARE: stands for People with Arthritis/Rheumatism in Europe and consists of national rheumatic patient organisations across Europe. They focus on actively involving people with arthritis/musculoskeletal conditions and encouraging them to take on a leading role in activities and projects that benefit their wider community. The Annual European Conference of PARE is held once a year in cities around Europe. Here representatives of the national rheumatism organisations have a chance to network with each other, get inspired and learn new things through workshops, lectures and networking events. LUPUS EUROPE is always represented.

SLEuro is a voluntary association that promotes scientific research and information with regard to SLE and related syndromes. The Society is building a community of clinicians and researchers interested in SLE at an international level, promoting research and education on SLE as well as equal access to the best standards of care for SLE patients across Europe, and facilitating research projects and clinical trials in SLE.

LUPUS EUROPE is a strong supporter of SLEuro whose goals are fully aligned with LUPUS EUROPE’s vision of “A fulfilling life for all people with lupus in Europe until we have reached a world without lupus”. Over a number of years, we have appreciated the relentless efforts of the academics and researchers at the origin of SLEuro. We cannot thank them enough for their dedication to Lupus Research, the building-up of a dialogue with lupus patient groups, and their every day care for all people living with lupus in  Europe. To all lupus doctors, we say a big THANK YOU, from the depth of our hearts.

EPF: stands for the European Patients Forum. It is an umbrella organisation that represents European patients from all chronic disease areas. They work alongside their members in public health and health advocacy across Europe. Their members represent specific chronic disease groups at EU level or are national coalitions of patients. Their vision is that all patients with chronic and/or lifelong conditions in the EU have access to high quality, patient-centred equitable health and social care. Their mission is to ensure that the patients’ community drives policies and programmes that affect patients’ lives to bring changes empowering them to be equal citizens in the EU. They do this through educational seminars, policy initiatives and projects. LUPUS EUROPE is very involved in the work of EPF and tries to be present in all relevant seminars and projects.

EULAR: stands for European League Against Rheumatism and is a pan European organisation for healthcare professionals, scientific societies and national patient organisations (see PARE), specifically for rheumatic diseases. EULAR’s aim is to reduce the burden of rheumatic diseases on the individual and society and to improve the treatment, prevention and rehabilitation of musculoskeletal diseases.

The EULAR Annual European Congress of Rheumatology is held once a year (usually in June) in alternating major cities around Europe. It is seen as the primary platform for exchange of scientific and clinical information in Europe. It is also a renowned forum for interaction between medical doctors, scientists, people with arthritis/rheumatism, health professionals and representatives of the pharmaceutical industry worldwide. LUPUS EUROPE is always represented.

IAPO: stands for The International Alliance of Patients’ Organizations and is a global alliance representing patients of all nations across all disease areas.

PARE: stands for People with Arthritis/Rheumatism in Europe and consists of national rheumatic patient organisations across Europe. They focus on actively involving people with arthritis/musculoskeletal conditions and encouraging them to take on a leading role in activities and projects that benefit their wider community. The Annual European Conference of PARE is held once a year in cities around Europe. Here representatives of the national rheumatism organisations have a chance to network with each other, get inspired and learn new things through workshops, lectures and networking events. LUPUS EUROPE is always represented.

LUPUS EUROPE SPONSORS

LUPUS EUROPE is run by a board consisting of eight members (six volunteers and two contractors providing  part-time paid secretariat), as well as co-opted volunteers as needed.

Unfortunately, LUPUS EUROPE cannot rely on public funding to run its activities. We therefore have to operate based on grants or donations from sponsors. In 2022, we have received support from industry for a total amount of 76.4% of our total budget. Non Pharma income has accounted for 23.5% of the total, with academics contributing 1.7%, volunteers 20.9%, and members 0.7%.

In our relations with industry, we rely on  the EFPIA Codes of Practice on relationships between the Pharmaceutical industry and patient organisations / healthcare professionals. We are particularly careful not to depend on any  single industry representative, and have fixed a target maximum contribution from a single firm to 20% of our budget. In 2022 the highest contribution of a single company has been 10.3% of our total budget.

Over the past year, LUPUS EUROPE has received support from the following partners and sponsors:

Logo of Bristol Myers Squibb in black writing with a purple hand image at the beginning

LUPUS EUROPE also enjoyed donations in kind from

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2 weeks ago
LUPUS EUROPE

🦋 Lupus is a complex autoimmune disease, and its exact cause is not fully understood.

✋ While various risk factors have been identified, such as genetic predisposition🧬 and exposure to certain environmental🌇 triggers, 𝗹𝘂𝗽𝘂𝘀 𝗺𝗮𝘆 𝗻𝗼𝘁 𝗯𝗲 𝗲𝗻𝘁𝗶𝗿𝗲𝗹𝘆 𝗽𝗿𝗲𝘃𝗲𝗻𝘁𝗮𝗯𝗹𝗲.

🔍 Understanding and managing these risk factors, along with early detection and appropriate medical care, are essential in effectively addressing #lupus and improving the quality of life for individuals affected by this condition.

🤔 So, how can we #kicklupus with prevention?
... See MoreSee Less

🦋 Lupus is a complex autoimmune disease, and its exact cause is not fully understood.

✋ While various risk factors have been identified, such as genetic predisposition🧬 and exposure to certain environmental🌇 triggers, 𝗹𝘂𝗽𝘂𝘀 𝗺𝗮𝘆 𝗻𝗼𝘁 𝗯𝗲 𝗲𝗻𝘁𝗶𝗿𝗲𝗹𝘆 𝗽𝗿𝗲𝘃𝗲𝗻𝘁𝗮𝗯𝗹𝗲. 

🔍 Understanding and managing these risk factors, along with early detection and appropriate medical care, are essential in effectively addressing #lupus and improving the quality of life for individuals affected by this condition.

🤔 So, how can we #KickLupus with prevention?Image attachmentImage attachment
4 weeks ago
LUPUS EUROPE

🌟 Calling all Lupus Patient Organisation Volunteers! 🌟

🗣️ Your Voice Matters!

We want to hear from YOU!

❓ Are you a volunteer for a lupus patient organisation?

Your insights are invaluable! 💎

Participate in our quick survey, taking just 2-3 minutes of your time, and help us understand volunteer motivations better.

Your feedback will help shape the future and help us understand what we should work on to make our volunteers happier and more motivated.

✍️ You can answer in English or in your own language.

Ready to share your thoughts?

🔗 Click the link below and let your voice be heard!

s.surveylegend.com/-NfBafeCoorOLsOkK1Du

🤗 Thank you for reading this post and considering answering the survey!

Together, we can make a huge difference! 💪
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1 CommentComment on Facebook

🤷‍♂️

4 weeks ago
LUPUS EUROPE

📆 New month, new challenge!

🍁 As the calendar flips to November, our #kicklupus campaign has a new theme!

🤔 Can you guess what this month's theme is all about?

💡 Hint: It's all about implementing measures to help us hold #lupus at bay!

🙌 Stay tuned for a month of discovery and empowerment as we unveil the importance of these measures in managing lupus.

Ready to embark on this journey with us? 💪
... See MoreSee Less

📆  New month, new challenge!

🍁 As the calendar flips to November, our #KickLupus campaign has a new theme! 

🤔 Can you guess what this months theme is all about?

💡 Hint: Its all about implementing measures to help us hold #lupus at bay!

🙌 Stay tuned for a month of discovery and empowerment as we unveil the importance of these measures in managing lupus. 

Ready to embark on this journey with us? 💪

1 CommentComment on Facebook

💪🏻🍀

1 month ago
LUPUS EUROPE

‼️Despite a higher risk of infection in #SLE patients, vaccination rates are low due to:

🔹Fear
🔹Lack of trust
🔹Feeling of unsafety
🔹Belief in good health
🔹Lack of recommendations by doctor

💡Let's #KickLupus by shedding light on the facts & debunking the misconceptions surrounding vaccinations for people with lupus.

𝐌𝐲𝐭𝐡 1️⃣: Vaccines & lupus flares

One of the most common fears among #lupus patients is the possibility of vaccines causing a flare.

✅ Prof. Arnaud states that the risk of flare after vaccination is not confirmed. Typically the benefits of vaccination outweigh any potential, small risks.

𝐌𝐲𝐭𝐡 2️⃣: People with lupus should avoid all vaccines

✅ While some vaccines may not be recommended for people with lupus, many vaccines are safe and important.

Protecting against infections is key, as even minor illnesses could lead to complications in individuals with SLE.

𝐌𝐲𝐭𝐡 3️⃣: Lupus patients can't receive live vaccines

✅ Live vaccines are not typically recommended for lupus patients. However, in certain circumstances, it may be appropriate for some people to get live vaccines.

It is crucial this is assessed on a case-by-case basis by your doctor.

𝐌𝐲𝐭𝐡 4️⃣: Vaccines worsen lupus symptoms

✅ Vaccines don't worsen lupus symptoms. In fact, they help protect against infections, which could be more severe in lupus patients.

𝐌𝐲𝐭𝐡 5️⃣: Lupus patients should only get vaccines if they are in remission

✅ According to EULAR recommendations, vaccination in patients with lupus should preferably be administered during quiescent disease.

For patients with active disease, immunisation should not be ruled out & should be assessed on an individual basis.

𝐌𝐲𝐭𝐡 6️⃣: One dose of the vaccine covers you for life

✅ If you have lupus, your doctor should assess your vaccination status every year. That ensures vaccination strategies continue to be aligned with your needs & medical history.

Always consult with your doctor. They will tell you which vaccination schedule is safe & effective for you

🌏 Help us #KickLupus by raising awareness of the importance of immunisation.

Check the EULAR recommendations for vaccination in adult patients with autoimmune inflammatory rheumatic diseases:

ard.bmj.com/content/79/1/39
... See MoreSee Less

‼️Despite a higher risk of infection in #SLE patients, vaccination rates are low due to:

🔹Fear
🔹Lack of trust
🔹Feeling of unsafety
🔹Belief in good health
🔹Lack of recommendations by doctor

💡Lets #KickLupus by shedding light on the facts & debunking the misconceptions surrounding vaccinations for people with lupus. 

𝐌𝐲𝐭𝐡 1️⃣: Vaccines & lupus flares

One of the most common fears among #lupus patients is the possibility of vaccines causing a flare.

✅ Prof. Arnaud states that the risk of flare after vaccination is not confirmed. Typically the benefits of vaccination outweigh any potential, small risks.

𝐌𝐲𝐭𝐡 2️⃣: People with lupus should avoid all vaccines

✅ While some vaccines may not be recommended for people with lupus, many vaccines are safe and important.

Protecting against infections is key, as even minor illnesses could lead to complications in individuals with SLE.

𝐌𝐲𝐭𝐡 3️⃣: Lupus patients cant receive live vaccines

✅ Live vaccines are not typically recommended for lupus patients. However, in certain circumstances, it may be appropriate for some people to get live vaccines.

It is crucial this is assessed on a case-by-case basis by your doctor.

𝐌𝐲𝐭𝐡 4️⃣: Vaccines worsen lupus symptoms

✅ Vaccines dont worsen lupus symptoms. In fact, they help protect against infections, which could be more severe in lupus patients. 

𝐌𝐲𝐭𝐡 5️⃣: Lupus patients should only get vaccines if they are in remission

✅ According to EULAR recommendations, vaccination in patients with lupus should preferably be administered during quiescent disease.

For patients with active disease, immunisation should not be ruled out & should be assessed on an individual basis. 

𝐌𝐲𝐭𝐡 6️⃣: One dose of the vaccine covers you for life

✅ If you have lupus, your doctor should assess your vaccination status every year. That ensures vaccination strategies continue to be aligned with your needs & medical history.

Always consult with your doctor. They will tell you which vaccination schedule is safe & effective for you 

🌏 Help us #KickLupus by raising awareness of the importance of immunisation.

Check the EULAR recommendations for vaccination in adult patients with autoimmune inflammatory rheumatic diseases:

https://ard.bmj.com/content/79/1/39Image attachmentImage attachment+6Image attachment