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

🚨 𝐋𝐚𝐬𝐭 𝐝𝐚𝐲 𝐭𝐨 𝐜𝐨𝐦𝐩𝐥𝐞𝐭𝐞 𝐭𝐡𝐞 𝐬𝐮𝐫𝐯𝐞𝐲❗

📈 In 2020, our "Living with Lupus" survey revealed the significant burden and vast differences in #SLE care across Europe from the patient's perspective.

🔊These findings have become invaluable to lupologists worldwide, shaping how this complex disease is understood and managed.

🎯 The insights from this new survey aim to build on the previous data, helping to refine treatment approaches and care strategies.

‼️ Your participation is crucial in providing a comprehensive view of the current challenges and needs faced by those living with lupus.

✅ The results will not only assist physicians but also inform patients and policymakers, playing a key role in advancing lupus care and advocacy efforts. This is your chance to contribute to a better understanding of lupus and to ensure that care strategies are as effective and tailored as possible.

🕒 Complete this anonymous survey before May 15th and help us capture the diverse experiences of individuals affected by lupus across Europe.

🌐 Available in 21 Languages:

🇨🇿 Czech s.surveylegend.com/-NtkhoZPH8WNeA5e2ZCC
🇩🇰 Danish s.surveylegend.com/-NqmjTjyUXHGLMmAu5qS
🇩🇪 German s.surveylegend.com/-Nr0_sVBruuAHJTsHkuE
🇬🇷 Greek s.surveylegend.com/-Nr5KNkcBGDrsYl1F1xG
🇪🇸 Spanish s.surveylegend.com/-Nudx9pGv-1XtZ6OnYWs
🇬🇧 English s.surveylegend.com/-NqgyR5b7jLpCyBwEssv
🇪🇪 Estonian s.surveylegend.com/-Nt145Q5s02kLYdspFDs
🇫🇷 French s.surveylegend.com/-NrWK4Io8HFYwgd_JF9W
🇮🇹 Italian s.surveylegend.com/-NsvfEBWVnGf0eLQEC-0
🇳🇴 Norwegian s.surveylegend.com/-NrQBaJNQ4HcwZblYzh5
🇱🇹 Lithuanian s.surveylegend.com/-NqwWcQ0UhyMxDtCBYRD
🇳🇱 Dutch s.surveylegend.com/-NqgyeOSaTVcd7gBoK15
🇵🇱 Polish s.surveylegend.com/-Nr1vl1sxwISBcDaeOzP
🇷🇴 Romanian s.surveylegend.com/-NrUOqKxZuU6V6KLfWoG
Russian s.surveylegend.com/-NtkhreGgEglDg9AeMfH
🇸🇮 Slovenian s.surveylegend.com/-Nt-wdNdIqT4v3ptXEM1
🇫🇮 Finnish s.surveylegend.com/-NrB_0Hf4Z-ZAZH55K7U
🇺🇦 Ukrainian s.surveylegend.com/-Nt1t0lpqlsn9jRPHe-3
🇧🇬 Bulgarian s.surveylegend.com/-NuOC4mQDrt8udTrqS85
🇵🇹 Portuguese s.surveylegend.com/-NuPMTJ2TjOzn2Oxa3Hi
🇭🇺 Hungarian s.surveylegend.com/-Nucu0zQ8je0kzInRWb8
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2 weeks ago

‼️ #Lupus is more than a disease with physical symptoms such as pain and fatigue; it's an illness that can influence every part of your life.

⚠️ #SLE can potentially affect a wide range of daily activities, from educational pursuits and career development to maintaining family relationships and social activities.

✅ That is one of the reasons why you have to complete the "Living with Lupus in 2024" survey: to understand the real-world impact of lupus to be able to advocate for better support, care, and treatment options.

🌟 Your insights are invaluable in shaping effective interventions and enhancing support systems for everyone affected by this complex condition in Europe.

🙏 Don't miss this unique opportunity to advocate for change and push for advancements in how lupus is managed and treated, ensuring that every individual receives the care they deserve.

🔗 Click on this link and select your language: s.surveylegend.com/-Nr54WsZrcnC-4BwDBrG
... See MoreSee Less

‼️ #Lupus is more than a disease with physical symptoms such as pain and fatigue; its an illness that can influence every part of your life.

⚠️ #SLE can potentially affect a wide range of daily activities, from educational pursuits and career development to maintaining family relationships and social activities.

✅ That is one of the reasons why you have to complete the Living with Lupus in 2024 survey: to understand the real-world impact of lupus to be able to advocate for better support, care, and treatment options.

🌟 Your insights are invaluable in shaping effective interventions and enhancing support systems for everyone affected by this complex condition in Europe.

🙏 Dont miss this unique opportunity to advocate for change and push for advancements in how lupus is managed and treated, ensuring that every individual receives the care they deserve.

🔗 Click on this link and select your language: https://s.surveylegend.com/-Nr54WsZrcnC-4BwDBrGImage attachmentImage attachment+1Image attachment
2 weeks ago

♦️ Few days left to fill the Living With Lupus in 2024 survey!

✍🏻 Izpolnite anketo.

🔊 Delite z vašo skupnostjo.

🙏 Help us achieve more answers to ensure the Slovak population is represented in the results

s.surveylegend.com/-Nt-wdNdIqT4v3ptXEM1

#lupusawarenessmonth
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