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The LUPUS EUROPE annual convention has just come to a close. Hosted in Milan by Lupus Italy on the occasion of their 30thanniversary, the convention was an inspiring event centred around the theme of “pain, fatigue and stress”, with Dr Chiara Tani as a key note speaker.

Benefitting from the Italian Lupus Clinic experience, we also covered other topics such as the treatment of women who wish to have children, the use of biologics, how specialised lupus Clinics operate, … Among those presenting, and working in one such clinic, was Fulvia Ceccarelli, a rheumatologist who is herself a lupus patient. It was certainly interesting to hear from someone who has experienced both sides of the doctor/patient relationship. We also took a closer look at the non-biological side of pain, fatigue and stress, with an excellent presentation by the president of the Belgian French Speaking association, Bernadette Van Leeuw. Davide Mazzoni, one of LUPUS EUROPE’s patient research partners, presented a new study which is looking at the possible effects of childhood trauma and the pathways into adulthood which can affect a person’s disease onset and progress. He then took us through the 2017 survey “AT HOME OR IN HOSPITAL?” on the preference for subcutaneous injection or intravenous infusion of biological therapy among Italian SLE patients.

Our Kick Lupus campaign had a wonderful boost with Jeanette Andersen taking us through the new exercise programme (soon to be released). Jeanette has herself made an incredible recovery from being unable to walk last year to jumping and running around this year following her back surgery. The programme has several levels and can be started even if unable to get out of bed.

The convention was also the opportunity to discuss the 2018-2023 strategic plan with our members. The plan, developed after extensive consultation with multiple stakeholders provides us with a clear path for the years ahead, in the pursuit of our vision of “A fulfilling life for all people with lupus in Europe until we have reached a world without lupus.” The Strategic plan discussions were concluded by the adoption of the new LUPUS EUROPE logo. Our many thanks go to Patrick and Sandra from setfire.to, the pro-bono sponsors who designed the logo for us and are now finalising our new website. They have clearly understood what LUPUS EUROPE Stands for: while retaining the symbolic lupus butterfly, it has a vibrant person at its core – just as we have our members and their members at the very heart of our work. We very much wanted a symbol of energy and hope, reflecting the already significantly better outlook for lupus patients today and all our hopes for the future.

This year, Kirsten Lerstrøm, LUPUS EUROPE chair, is stepping down. We cannot thank her enough for 10 years of devoted service and dogged determination to serve the cause of people living with lupus. She has encouraged us to keep the momentum and we look to the future with hope and determination. At the close of the convention, Jeanette Andersen was elected as the new Chair of LUPUS EUROPE, and Alain Cornet was appointed to the newly created position of General Secretary.

We are happy to present the 2018 board who we are sure will continue to serve the best interests of LUPUS EUROPE’s member organisations. From left to right: Katharine Wheeler (Vice-Chair & Secretary), Kirsi Myllys (Treasurer), Anne Charlet (Vice-Chair),  Jeanette Andersen (Chair), Annemarie Sluijmers (Skin) and Sara Badreh (Research & Youth).

board pic 2017

These few lines are just a taster, from a very full convention. More news and a complete convention report will be on its way soon.

 

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6 days ago
LUPUS EUROPE

Do you have #lupus?

Are you 18-30 years old and a volunteer of your national lupus group or interested in volunteering? In that case, get in contact with us and join us for exciting opportunities to exchange ideas and have some fun!

Send an email to zoe@lupus-europe.com and we will tell you more …
... See MoreSee Less

Do you have #lupus?

Are you 18-30 years old and a volunteer of your national lupus group or interested in volunteering? In that case, get in contact with us and join us for exciting opportunities to exchange ideas and have some fun!

Send an email to zoe@lupus-europe.com and we will tell you more …
2 weeks ago
LUPUS EUROPE

In Lupus Europe, we work hard to fulfil our mission. A very important part of that work is to not only be successful in the projects we undertake, but to have high standards and to work collaboratively with #lupus patients, our member organisations and also with lupologists!

This morning we had a medical roundtable meeting, where we had the opportunity to discuss our Strategic Plan for 2023-2028 with a team of incredible lupologists: Professors Arnaud, Houssiau, Limper, Mosca and Schneider gave us incredibly useful feedback today and we had a very productive meeting with them!
... See MoreSee Less

In Lupus Europe, we work hard to fulfil our mission. A very important part of that work is to not only be successful in the projects we undertake, but to have high standards and to work collaboratively with #lupus patients, our member organisations and also with lupologists! 

This morning we had a medical roundtable meeting, where we had the opportunity to discuss our Strategic Plan for 2023-2028 with a team of incredible lupologists: Professors Arnaud, Houssiau, Limper, Mosca and Schneider gave us incredibly useful feedback today and we had a very productive meeting with them!Image attachment
3 weeks ago
LUPUS EUROPE

We are delighted to announce the start of our annual #KickLupus competition! Send your submission in the format of your choice (drawing/video/writing) & tell us:
How has volunteering for a #lupus organisation helped change your life?
Amazing prize to be announced soon!
... See MoreSee Less

We are delighted to announce the start of our annual #KickLupus competition! Send your submission in the format of your choice (drawing/video/writing) & tell us: 
How has volunteering for a #lupus organisation helped change your life? 
Amazing prize to be announced soon!
3 weeks ago
LUPUS EUROPE

LUPUS EUROPE • Newsletter • November 2022

Have you read our latest newsletter?
Read all about it by going to
mailchi.mp/lupus-europe.org/lupus-europe-newsletter-november2022
... See MoreSee Less

LUPUS EUROPE • Newsletter • November 2022

Have you read our latest newsletter? 
Read all about it by going to
https://mailchi.mp/lupus-europe.org/lupus-europe-newsletter-november2022

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LUPUS EUROPE Uniting people with Lupus throughout Europe
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