LUPUS EUROPE MEMBERS

LE MEMBERS

LUPUS EUROPE MEMBER ORGANISATIONS

 

If you would like to contact one of our National Member Organisations, just send an e-mail to secretariat@lupus-europe.org 
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Belgium (Flemish)

Liga voor Chronische
Inflammatoire Bindweefselziekten vzw
Ingrid Hennes

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Belgium (French)

Lucie Lété

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Bulgaria

Bulgarian organisation for people with rheumatic diseases

Boryana Boteva

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Croatia

Petra Plivelić

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Cyprus

Lupus Cyprus – Cyprus League of People with Rheumatism
Andri Phoka

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Estonia

Ingrid Poldemaa

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Finland

Elina Tammistola

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France (LUPUS France)

Lupus France
Catherine Guislain

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Greece

The Lupus Group of ELEANA: Katerina Rousta

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Netherlands

Wendy Zacouris

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Norway

Kari Odegardt

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Poland

Part of 3majmy Się Razem Viola Zajk

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Portugal

Rita Mendes

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Slovakia

Petra Balazova

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Spain

Silvia Perez Ortega

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Sweden

Katrin Rudgard

Riksförening för SLE

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Switzerland

Martin Bienlein

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United Kingdom

Caroline Olshewsky

LE ASSOCIATE MEMBER ORGANISATIONS

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Ireland

Caroline Daly

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Israel

Inbar Association for Rheumatic and Autoimmune Diseases

Sharon Abuloff Ram

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Montenegro

Igor Medojevic

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🚨 Today is #WORDDAY2026! Which stands for WOrld Young Rheumatic Disease Day.

🌍 Through this global event, we can spread the word that children and young people get rheumatic diseases like lupus, too.

‼️ It is estimated that around 15-20% of #lupus patients are children, although it is rare that a child develops lupus before 5 years of age.

As with adult patients, the cause of lupus remains unknown, and there is a great choice of treatments to keep the disease under control.

🔴 On average, it takes nearly 6 years for people with lupus to be diagnosed. This delay in diagnosis, and therefore in treatment, can have an impact on the prognosis and quality of life of patients; this includes kids.

😰 The moment your child gets a diagnosis might be overwhelming for you. This feeling of overwhelm can and does go away with time and with access to the right information.

👉 Remember: it is impossible to learn everything about #lupus overnight! Your child's doctor is the best source of information.

Apart from pharmacological treatment, other non-pharmacological measures can also help in lupus management.

📷 Take a look at the images we are sharing today to learn about these non-pharmacological measures and share them with your community to help us raise awareness.

🐺 Lupus can seem scary at first. Remember that you are not alone and that you are going to do a great job!

Turn to your lupus association for support.

🤗 There are many organisations across Europe that can help you and your child cope with the disease.

More information on #SLE in children at #Lupus100: f.mtr.cool/oklkpqamyu

For more information on WORD Day, you can visit World Young Rheumatic Diseases Day - WORD Day
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🔴 Tomorrow is #WORDDAY2026!

🦋 And we will be sharing tips and information on how #lupus can affect children.

Help us raise awareness, which is key for an early diagnosis & a quick referral to a specialised paediatric rheumatologist.

Share our posts and follow the World Young Rheumatic Diseases Day - WORD Day campaign.

More information on lupus in children at #Lupus100 (19 languages):

f.mtr.cool/hnfukbkwdf
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🔴 Tomorrow is #WO

Watch this Lupus Europe Webinar on the European Lupus Meeting (ELM) 2026, As Viewed by Lupus Europe's PAN Members & Volunteers!

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0 CommentsComment on Facebook

Thank you so much for bearing with us. We’re experiencing some unexpected technical difficulties with Facebook Live in relation to the European Lupus Meeting (ELM) 2026 webinar due to air at 19:00 CET. The webinar is being recorded, and we will make sure it is shared with you as soon as possible. ... See MoreSee Less

Thank you so much fo