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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7 days ago
LUPUS EUROPE

We have exciting news!!!

Lupus Europe keeps growing! Sara Badreh has now joined our team as the Patient Advisory Network (PAN) coordinator!
We are very excited to be working with Sara; you can read more about her in our newsflash!

What is the PAN?

At LUPUS EUROPE we believe that patients have great potential to be an added value in research and development. That's why we invest in training and have created our PAN: trained patients involved in research projects with organisations like EULAR, the European SLE Society and ERN Reconnet.

The PAN is formed by 25-30 trained and energised patients, experienced in living with #lupus, appointed by LUPUS EUROPE to act as liaison and resource to value-adding scientific projects, clinical trials and other research related to lupus. They also had an active role in #LUPUS2022!

The PAN also connects the patient community to the scientific community by providing prompt, reliable and consistent advice and support from the very initial stages of research all the way to effective access through treatment plan

Do you want to see what it is like to be part of the PAN? In this video, Francesca shares her insight

youtu.be/eJtGDtL9Ngg

Do you want to be part of this amazing team?

If the answer is "YES”, e-mail zoe@lupus-europe.org and find out more about it. No previous knowledge needed!

Don't miss our Newsflash, where our Chair, Jeanette Andersen, introduces Sara Badreh, talks about her background and her role in Lupus Europe.
Welcome to the team Sara!

mailchi.mp/lupus-europe.org/lupus-europe-newsletter-january-2023
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1 week ago
LUPUS EUROPE

Remember!

Our #kicklupus competition is running! Get your chance to attend our #lupusconvention and see firsthand all that we are doing for the European #lupus community!

All you have to do is tell us how volunteering for a lupus organisation has helped you changed your life. Send your testimonial (drawing, short/long text, song... any format is valid!) to zoe@lupus-europe.org.

As our Chair, Jeanette Andersen says, you can do it in your own language!
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1 week ago
LUPUS EUROPE

Comorbidity occurs when a person has more than one disease or condition at the same time. 2 of the most frequent comorbidities in #SLE are cardiovascular diseases and infection.
Prevention is key.

As per Dr. Angela Tincani says, "don't be worried because you have a higher risk than the general population. Take action to prevent it because there are several effective strategies:
- Stop smoking
- Have a healthy diet
- Do exercise
- Follow what your Dr. says.

Learn more about prevention and lupus here:

youtu.be/l10LsKDDkuY
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2 weeks ago
LUPUS EUROPE

Remember that next Wednesday, 18th January, at 17:00 CET (i.e. Paris time), we will be able to learn the latest data on #fatigue in #SLE thanks to Prof. Arnaud and Lou Kawka.

Don't miss this amazing ERN RECONNET webinar and register now!

us02web.zoom.us/webinar/register/WN_s-I4UVxsTW-eJd3bKPLvSg
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