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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Today is rare disease day!

🚨 There are over 300 million people who live with a #raredisease in #europe.

🌎 Today, we join our fellow patient organisations that work towards a better life for people with rare diseases and their families.

🔴 Some facts about #rarediseases:

1️⃣ There are more than 6000 identified rare diseases.

2️⃣ Rare diseases currently affect 5% of the worldwide population.
The true impact of rare diseases is much wider, however, with those affected in Europe in the millions, as the disease affects not only the patient but also our loved ones.

3️⃣ 72% of genetic diseases are genetic, although #lupus is not one of them.
👉 Lupus is not a genetic disease. Although it is very much related to genes, there are other factors that play a role in its manifestation.

4️⃣ 👶Neonatal #lupus is a rare congenital disorder that some infants of mothers with lupus and anti-Ro/SSA and/or anti-La/SSB antibodies develop.
The most serious complication of neonatal lupus is a heart condition known as congenital heart block.

5️⃣ Having an early diagnosis is key to having access to the right treatment. This has an impact on physical and mental health and, therefore, on the quality of life.

Along with organisations like Rare Disease Day and EURORDIS-Rare Diseases Europe, we will carry on working towards an early diagnosis, access to treatment and equality for #raredisease patients 🙌.

Thank you for your support on this #rarediseaseday!

#ShareYourColours
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#lupus is a #raredisease that affects nearly 500,000 people in Europe. Furthermore, there are over 300 million people who live with a #raredisease in #europe.

Today, along with Rare Disease Day, patient organisations around the world advocate for equity for people living with a rare disease

#ShareYourColours and help us spread the word by liking and sharing. Remember that you can also download the material of the official campaign on the website

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#Lupus is a #RareDis

Today is #RareDiseaseDay!

And we have joined Rare Disease Day campaign.

Everyone deserves equal opportunities, access to healthcare ➕ early diagnosis, which is key to setting a treatment plan &, hence, achieving a good quality of life.
#ShareYourColours

www.youtube.com/watch?v=7J1oTfoIOGw
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Today is #RareDiseas

😃 Throwback to the HMA/EMA Multi-Stakeholder Workshop on Artificial Intelligence.

Watching Alain Cornet show the world what #LupusGPT really is still gives us goosebumps! 🙌

For those who still don't know this artificial intelligence tool:

💡 LupusGPT is built by patients and doctors.
🗣️ It speaks virtually any language.
💸 It’s free and anonymous- you don’t need to create an account.
📚 It is trained exclusively on a curated repository of validated documents.
🚫 It does not invent answers.

If something is not in the repository, LupusGPT will clearly say so. It will not guess. It will not generate false information.

🥹 Seeing LupusGPT presented at such a high-level regulatory forum confirmed something important:
Patient-led innovation can meaningfully contribute to the future of AI in medicine when it is built responsibly.

🔗 Try it here! lupusgpt.org/

🧠 Are medical terms confusing? Prefer shorter explanations in simple language?
Try #EasyLupus! The easy-read version of LupusGPT: easy.lupusgpt.org/
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LUPUS EUROPE Uniting people with Lupus throughout Europe
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