Occasionally you might receive an e-mail that seems like it has come from Lupus Europe but has not been sent by us. This might be a fake message that has been sent by scammers, criminals who want to steal your data and your money. This kind of scam is called “phishing” or “spear phishing” and it is, unfortunately, very common worldwide. Recently, a number of not-for-profit organisations and their members have been victims of such attempts. Fake messages are increasingly sophisticated, looking like real ones, so you have to be careful and learn to spot scams!

 

 

We have put together some tips you can use to recognise phishing and spear phishing:

 

  • Double check the sender’s e-mail address

 

Any communication from Lupus Europe, or from any other legitimate organisation, should come from that organisation’s e-mail system, not from an unknown email address. For example, an e-mail from one of us at Lupus Europe should come from sender@lupus-europe.org (where sender is the name or position of the person sending the e-mail), not from sender@lupuseurope.org or sender@lupuseeurope.com

 

Also check that the name or position of the person the e-mail is meant to have come from is spelled correctly.

 

Watch out, what matters is the email address, not the name that appears as the sender. Faking e-mail addresses is very easy, spotting these differences can help you spot scams!

 

 

  • Check the e-mail’s content

 

Does the e-mail’s content seem valid? Are there typos or spelling errors in the e-mail? Do the grammar and tone of the e-mail seem appropriate for the organisation it is supposed to be coming from? Beware of content that seems odd, unusual or inappropriate.

 

Always double check with someone else from the organisation or using another method of communication if something feels off. Do not try to check by responding to the sender!

 

 

  • Is the sender asking you for money, your bank account number or any other personal financial information?

 

 

Be careful of any e-mails asking for this information, even if the sender is saying they need your bank details so they can send you money. Never give your bank account number, personal financial information and do not send money unless you are absolutely sure who you are sending it to.

 

Use another method of communication to verify the e-mail asking for such personal information actually came from the organisation or person it appears to have come from. E-mail someone else in the organisation or contact the sender using another communication method to double check the e-mail is genuine before giving out any information. Always beware of any e-mails that ask for such information or money.

 

Please remember Lupus Europe will never ask you for financial support beyond your membership fees.

 

  • Is there a sense of urgency in the e-mail?

 

Scammers know that people who have time to think something through, can often pick up on things that are a bit off about an e-mail or communication. This is why scammers commonly ask that people act now, urgently, without any delay. This type of scam is usually linked to requests for help, money, financial information, bank account numbers, passwords et cetera. Also beware of e-mails that tell you you need to follow a link urgently, within 24 or 48 hours or else you will lose access to one of your accounts.

 

Phishing scams that create a sense of urgency are really dangerous, because people can respond quickly without thinking things through. Beware of any e-mails that create a sense of urgency, especially when they are linked to requests for financial help, personal financial information, your passwords et cetera.

 

Take some time to think things through.

 

Does the request make sense? Always double check requests that appear strange or off with someone else in the organisation or through another means of communication before you respond!

 

Do not fall for scams!

 

I received a suspect message from an organisation. What do I do?

 

Do not share any bank details, personal financial information, passwords and never send money!

 

Do not download anything from a message you think is fake. Do not click any links contained in the message. Get in touch with the organisation through another e-mail address you know for a fact is genuine and have used before or get in touch with the organisation using another method of communication; do let the organisation know you received what you think is a phishing e-mail.

 

 

I received a phishing e-mail and downloaded something from the e-mail or sent money to the scammers. What do I do now?

 

You should always have antivirus software installed on all your devices. If you downloaded anything from a phishing e-mail, scan your devices for malware using your antivirus software. If you replied to the e-mail and sent scammers your bank details or any money, do get in touch with your bank and the police immediately.

 

It’s very easy to fall for a scam like this, learning what to look out for helps stop the scammers.

 

Here is a video on Phishing and Spear Phishing from the European Union Agency for Cybersecurity (ENISA):

 

 

To find out more about phishing, you can go to:

 

https://www.enisa.europa.eu/topics/csirts-in-europe/glossary/phishing-spear-phishing

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We are very proud to share that LupusGPT has now been published in The Lancet Rheumatology, one of the world’s leading medical journals in rheumatology.

For us, this is not only about a publication. It is about what LupusGPT stands for.

LupusGPT is free. It is patient-led. And it was built to help people living with lupus find reliable, accessible information in almost any language.

It began with a simple but important question: what could become possible if patients, clinicians, and digital experts truly worked together from the start?

That question was first opened up in a fishbowl discussion at the European Lupus Meeting 2024 on how the lupus community could get the best, but not the worst, out of AI. From there, LupusGPT was shaped through the care, intelligence, and effort of many people: volunteers, patient testers, clinicians testing across languages, people who gave feedback, and people already helping us share it with patients in clinics, organisations, and communities.

This publication matters because it shows that patient-led innovation belongs in the scientific world too. It shows that when patient voice is not added at the end, but built in from the start, something real can grow.

A heartfelt thank you to all authors: Zoe Karakikla-Mitsakou, Alain Cornet, Jeanette Andersen, Sarah Dyball, Cristiana Sieiro Santos, Daniel Guimarães de Oliveira, and Laurent Arnaud. Special thanks also to Daniel Guimarães de Oliveira for the thought, care, and belief he brought to this work, and to Professor Laurent Arnaud for his outstanding support, steadiness, and guidance.

And above all, thank you to everyone in the Lupus Europe community who keeps showing us why this matters.

LupusGPT. Free. Multilingual. Patient-led. And now part of the scientific record.

doi.org/10.1016/S2665-9913(25)00370-4

Read it for free now! You only need to register (registration is completely free and takes 1')
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We are very proud to

🚨 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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