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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🦋 Our final #EULAR2026 recap is here!

🌍 We started the day in the session “Next-Gen Treatments: CAR-based Therapies and Beyond in RMDs”, chaired by our Chair, Jeanette Andersen.

The session explored new therapeutic frontiers, but also the responsibilities that come with them. For us, one message remains essential: innovation must be developed with patients, not only for patients.

💬 Jeanette also delivered the PARE Meet the EULAR Expert session “AI as a Partner in Care: Empowering the RMD Community with Information”.

The room was packed, showing the strong interest around #LupusGPT and #EasyLupus as powerful patient-led, validated digital tools that help people living with lupus access reliable, understandable information in almost any language.

The many questions from attendees showed how relevant this topic has become for healthcare professionals, researchers, patient representatives and the wider rheumatology community.

🧬 We also followed the “How to treat SLE” session with George Bertsias, who focused on current and evolving approaches in lupus care, including treat-to-target strategies, remission or low disease activity, and the importance of reducing long-term organ damage.

🦴 Later, Edward Vital led the Meet the EULAR Expert session on “Management of joint involvement in systemic lupus”, a topic that matters deeply to many people living with lupus.

💜 A special highlight of the day was seeing Lupus Europe’s work recognised during the EULAR highlights another year.

These sessions take place at the very end of the Congress and bring together the key takeaways from #EULAR2026. Importantly, there are no parallel sessions at that time, which means there is no competition with other talks, and most of the attendees are in the room.

🙏 Thank you to everyone who followed, shared, visited us, spoke with us and supported us throughout #EULAR2026.
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🦋 We continue bringing you our #EULAR2026 congress recaps!

The third day was another intense day for Lupus Europe, with patient-led research, emerging science and important conversations about lived experience, as well as ongoing and potential projects to improve lupus care.

🧠 One of the highlights was Alain Cornet’s poster on mental health trajectories in lupus: “Mapping mental health trajectories in lupus: patient-identified inflection points and support opportunities from a European patient panel”.

Presented by Ricky Chotai on Alain’s behalf, this patient-led work explored how people living with lupus and mental health difficulties understand mental health across the lupus journey.

Yesterday, we already told you more about this poster and its key messages, in case you missed it!

🦠 On 5 June, we followed emerging science on the microbiome, and the Meet the EULAR Expert session “Management of joint involvement in systemic lupus” with Professor Edward M. Vital.

📊 Disease activity measurement in SLE was another important theme, especially how clinical targets can be better aligned with lived experience.

♀️ Menopause was part of the day’s conversations, highlighting the importance of asking about it routinely and recognising how hormonal transitions may shape symptoms and quality of life.

🌍 Across the day, one message kept returning: better lupus care needs science, but also communication, patient priorities and tools that help people say what matters most.

That is exactly why tools such as the Lupus Consultation Cards matter. They are available in 20 languages and help people prepare for their lupus appointments by organising symptoms, concerns and top questions in advance. Check them out here: www.lupus-europe.org/lupus-consultation-cards/

💬 We kept connecting these discussions with #LupusGPT and #EasyLupus, because access to understandable, reliable information before and after consultations is part of helping people take a more active role in their care.

🥳 And we celebrated Jeanette's birthday!

😃 Want to know more? Catch up on the latest insights from the congress in our #EULAR2026 Recap Webinar, which you can watch here: www.facebook.com/LupusEurope/videos/2035644043691260
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😃 Last week at #EULAR2026, we presented POS0246-PARE, “Mapping mental health trajectories in lupus: patient-identified inflexion points and support opportunities from a European patient panel”.

The poster was presented by Ricky Chotai, Lupus Europe Board Member, on behalf of Alain Cornet, Lupus Europe Finance Lead & Organisation Coach, and lead author of this work.

✅ This patient-led qualitative work explored how people living with lupus and established, currently stable mental health difficulties understand the trajectory of mental health across the lupus journey.

‼️ Based on our patient panel conducted in Portugal with 8 adults living with lupus, the work identified key moments when support may matter most: diagnostic uncertainty, early disease phases, fluctuating symptoms, and communication with healthcare professionals.

🔴 One of the key messages is clear: mental health in lupus should not be seen only as an isolated symptom or crisis. It can be shaped over time by interactions with uncertainty, communication, and care structures.

The findings point to practical opportunities for support, including earlier acknowledgement of mental health concerns at diagnosis, normalising mental health discussions in lupus care, clearer communication during periods of uncertainty, peer support, and integrated psychosocial support throughout the disease course.

💫 Congratulations to Alain Cornet for this outstanding poster and to all authors: Zoe Karakikla-Mitsakou, Jeanette Andersen, Ricky Chotai, and Alain Cornet.

Read the abstract:
distribution-congress.eular.org/from.storage?image=15rRXWmdOAJ77zPlkD-rQtl85j9jAymUnt6XfjsO2C9rls...
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😃 Last week at #E

💜 Thank you to everyone who attended our EULAR 2026 Recap Webinar and joined us to look back at one of our most exciting congresses in recent years.

🤩 #Eular2026 has been intense, inspiring and full of moments we will remember.

Over the Congress, Lupus Europe contributed to and followed an incredible amount of work:

✅ 7 presentations as speakers
✅ 3 sessions chaired
✅ 66 sessions attended
✅ 318 presentations followed
✅ All the interviews you have been able to see in this webinar

But it is not only about numbers.

🌟It is also about the people behind them: the commitment, the humour, the hugs, the shared tiredness, the late nights, the conversations between sessions, and the spirit of this amazing Lupus Europe family.

What makes our work possible is not only the support we receive from our community, partners and friends.

🥰 It is also the energy, attitude, and generosity of our volunteers, who give their time, expertise and heart to Lupus Europe.
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LUPUS EUROPE Uniting people with Lupus throughout Europe
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