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 2019, we have received support from industry for a total amount of 165,084 Euros, or 91% of our total budget. Non Pharma donations have accounted for 12,238 euros (7% of total), members have contributed 4,546 euros (2%).

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 2019 the highest contribution of a single company has been 19% of our total budget.

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

LUPUS EUROPE also enjoyed donations in kind from

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11 hours ago
LUPUS EUROPE

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Thank you Martijn, for your question! We will ensure your question is raised 🙂

Thank you for following this joint Lupus Europe / ERN ReCONNET webinar! If you have any questions for the speakers, please post them here and we will ensure they are raised! 😃

Hi from Corfu thank you for this it was really helpful!!!

I am curious about diet and microbiome as well. I think the topic is very much understudied and not good understood - but has great influence.

There are huge differences!

Are there possibility’s with food to have remission

There were only young people for the treatment with Car-T cells In am nog young any more. Is ther hope for me?

Only on my phone de zoom started. I do not know why

Metty Staal volgt

What is there to expect the coming years. I mean mean in treatments?

Thank you very much professor Arnoud

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12 hours ago
LUPUS EUROPE

Our joint webinar with ERN RECONNET is also going on Facebook Live!

If you have not been able to register, go to our Facebook Page and enjoy "#EULAR2023 Debrief–for people living with #lupus".

1 hour to go! 😃

www.facebook.com/LupusEurope
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Our joint webinar with ERN RECONNET  is also going on Facebook Live! 

If you have not been able to register, go to our Facebook Page and enjoy #EULAR2023 Debrief–for people living with #lupus.

1 hour to go! 😃

https://www.facebook.com/LupusEurope
20 hours ago
LUPUS EUROPE

🚨Don't miss our webinar today🚨

Along with ERN RECONNET, we have organised this "#EULAR2023 Debrief–for people living with #lupus" webinar with speakers Prof. Laurent Arnaud and our Chair, Jeanette Andersen.

Today at 19.30 CEST (i.e. Paris time).

Register by sending an email to secretariat@lupus-europe.org now!

This is the link to the webinar: us02web.zoom.us/postattendee?mn=M427EvtnmvHdk0JAHWvzvFfSLI8DNl0Dwz8Q.UQk33isEc4kWzlqy

𝗛𝗼𝘄𝗲𝘃𝗲𝗿, 𝘆𝗼𝘂 𝘄𝗶𝗹𝗹 𝗻𝗼𝘁 𝗯𝗲 𝗮𝗱𝗺𝗶𝘁𝘁𝗲𝗱 𝘁𝗼 𝘁𝗵𝗲 𝘄𝗲𝗯𝗶𝗻𝗮𝗿 𝘂𝗻𝗹𝗲𝘀𝘀 𝗿𝗲𝗴𝗶𝘀𝘁𝗲𝗿𝗲𝗱.

Registration is compulsory.
... See MoreSee Less

🚨Dont miss our webinar today🚨

Along with ERN RECONNET, we have organised this #EULAR2023 Debrief–for people living with #lupus webinar with speakers Prof. Laurent Arnaud and our Chair, Jeanette Andersen.

Today at 19.30 CEST (i.e. Paris time).
  
Register by sending an email to secretariat@lupus-europe.org now! 

This is the link to the webinar: https://us02web.zoom.us/postattendee?mn=M427EvtnmvHdk0JAHWvzvFfSLI8DNl0Dwz8Q.UQk33isEc4kWzlqy

𝗛𝗼𝘄𝗲𝘃𝗲𝗿, 𝘆𝗼𝘂 𝘄𝗶𝗹𝗹 𝗻𝗼𝘁 𝗯𝗲 𝗮𝗱𝗺𝗶𝘁𝘁𝗲𝗱 𝘁𝗼 𝘁𝗵𝗲 𝘄𝗲𝗯𝗶𝗻𝗮𝗿 𝘂𝗻𝗹𝗲𝘀𝘀 𝗿𝗲𝗴𝗶𝘀𝘁𝗲𝗿𝗲𝗱.

Registration is compulsory.

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Not succeeding to send an email for registration. I would like to participate. Thanks

Bonjour, en quelle langue sera la webinaire s'il vous plaît

Joy and happiness is all i see around ever since i came in contact with this great man. i complained bitterly to him about me having herpes only for him to tell me it’s a minor stuff. He told me he has cured thousands of people but i did not believe until he sent me the herbal medicine and i took it as instructed by this great man, only to go to the hospital after two weeks for another test and i was confirmed negative. For the first time in four years i was getting that result. i want to use this medium to thank this great man. His name is Dr aziegbe, i came in contact with his email through a friend in UK and ever since then my live has been full with laughter and great peace of mind. i urge you all with herpes or HSV to contact him if you willing to give him a chance. you can contact him through this email DRAZIEGBE1SPELLHOME@GMAIL .COM He also cured my friend with HIV and ever since then i strongly believe he can do all things. Don't be deceived thinking he does not work, i believe if you can get in contact with this man all your troubles will be over. i have done my part in spreading the good news. Contact him through his email and you will be the next to testify of his great work. web.facebook.com/Herpes-std-cure-dr-aziegbe-herbal-cure-103360314788997/

1 day ago
LUPUS EUROPE

One of our PAN members explains to the Italian lupus community what is #Lupus100 and what it can offer: high-quality and reliable information about #lupus in a patient-friendly language!

At the moment, available in 🇬🇧 🇩🇰 🇩🇪 🇪🇸 🇬🇷 🇫🇷 🇮🇹 🇳🇱 🇷🇴 🇫🇮 🇺🇦.

More languages to come soon! Stay tuned, and don't miss it!

lupus100.org/
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Grazie

💜💜💜