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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5 days ago

🇮🇸 Spotlight on Lupus Iceland!

At our #LupusConvention, Lupus Iceland presented an inspiring poster showing why patient organisations are essential: they identify unmet needs and work towards practical solutions.

Did you know they import sun protection products, like hats & sunscreen, that are not sold in Iceland? How amazing is that? 😍

📰 Through articles in newspapers and radio interviews, they help raise public awareness about lupus and its challenges, giving visibility to the voices of patients in Iceland.

💬 They also hold monthly meetings to answer questions, share updates, and build a strong support network.

💜 And they’re working to translate #Lupus100 into Icelandic! Making reliable information about lupus accessible to even more people across Europe.

👏 Thank you, Lupus Iceland, for your dedication and hard work. A perfect example of how important patient organisations are, and how much patients can achieve when they work together!
... See MoreSee Less

🇮🇸 Spotlight on Lupus Iceland! 

At our #LupusConvention, Lupus Iceland presented an inspiring poster showing why patient organisations are essential: they identify unmet needs and work towards practical solutions.

Did you know they import sun protection products, like hats & sunscreen, that are not sold in Iceland? How amazing is that? 😍

📰 Through articles in newspapers and radio interviews, they help raise public awareness about lupus and its challenges, giving visibility to the voices of patients in Iceland.

💬 They also hold monthly meetings to answer questions, share updates, and build a strong support network. 

💜 And they’re working to translate #Lupus100 into Icelandic! Making reliable information about lupus accessible to even more people across Europe.

👏 Thank you, Lupus Iceland, for your dedication and hard work. A perfect example of how important patient organisations are, and how much patients can achieve when they work together!
2 weeks ago

🇧🇪 Spotlight on Lupus Belgium!

During our #LupusConvention, several member associations presented their posters, showing the incredible work being done across Europe to support people living with lupus.

🔝 The ASBL Lupus Erythematosus Association presented their inspiring activities, all focused on informing, connecting and empowering people living with lupus across the country.

🖥️ In May, they proudly launched their new website, www.lupus.be, offering visitors reliable information and an easier way to stay connected with their community.

Did you know that our Capacity Programme supported this initiative? If you are a member of Lupus Europe and have a project that requires assistance, please send us an email and we'll be glad to help.

🧘‍♀️ Through their Yoga Workshop, they create a safe space, helping members find wellbeing- an initiative they will continue in the coming year.

📖 Their magazine, Le Lien, published two new editions this year, sharing the latest scientific advances, patient stories and perspectives on lupus, continuing to bridge knowledge and experience.

🎓 They also support therapeutic workshops, empowering both patients and caregivers through training designed to improve understanding and self-management of #lupus.

🌸 With a growing community of more than 3,000 followers on Facebook, Association Lupus erythémateux Belgique continues to build a safe space where people can stay informed, supported and connected.

📅 And on October 18th, they’ll host their Annual Day! That will focus on troublesome symptoms and new treatments- don't miss out!

💜 Congratulations to The ASBL Lupus Erythematosus Association for their ongoing commitment and creativity. You are a wonderful example of how local initiatives can make a real difference for those living with lupus.
... See MoreSee Less

🇧🇪 Spotlight on Lupus Belgium!

During our #LupusConvention, several member associations presented their posters, showing the incredible work being done across Europe to support people living with lupus.

🔝 The ASBL Lupus Erythematosus Association presented their inspiring activities, all focused on informing, connecting and empowering people living with lupus across the country. 

🖥️ In May, they proudly launched their new website, www.lupus.be, offering visitors reliable information and an easier way to stay connected with their community.

Did you know that our Capacity Programme supported this initiative? If you are a member of Lupus Europe and have a project that requires assistance, please send us an email and well be glad to help.

🧘‍♀️ Through their Yoga Workshop, they create a safe space, helping members find wellbeing- an initiative they will continue in the coming year.

📖 Their magazine, Le Lien, published two new editions this year, sharing the latest scientific advances, patient stories and perspectives on lupus, continuing to bridge knowledge and experience.

🎓 They also support therapeutic workshops, empowering both patients and caregivers through training designed to improve understanding and self-management of #lupus.

🌸 With a growing community of more than 3,000 followers on Facebook, Association Lupus erythémateux Belgique continues to build a safe space where people can stay informed, supported and connected.

📅 And on October 18th, they’ll host their Annual Day! That will focus on troublesome symptoms and new treatments- dont miss out!

💜 Congratulations to The ASBL Lupus Erythematosus Association for their ongoing commitment and creativity. You are a wonderful example of how local initiatives can make a real difference for those living with lupus.Image attachmentImage attachment+3Image attachment
2 weeks ago

📢 Calling all #lupus patients!

🦋 Lupus is a rare autoimmune disease that can potentially impact every aspect of life. From daily activities and social interactions to work and access to support, living with #SLE presents unique challenges that need to be addressed.

✍️ That is why we invite you to participate in the #RareBarometer survey by EURORDIS-Rare Diseases Europe.

Your insights can make a difference and help shape future policies that support people living with this condition.

🙏 Thanks for sharing your experience!

🔗 www.sphinxonline.com/surveyserver/s/EURORDIS75/MH_interface/questionnaire.htm
... See MoreSee Less

📢 Calling all #lupus patients!

🦋 Lupus is a rare autoimmune disease that can potentially impact every aspect of life. From daily activities and social interactions to work and access to support, living with #SLE presents unique challenges that need to be addressed.

✍️ That is why we invite you to participate in the #RareBarometer survey by EURORDIS-Rare Diseases Europe.

Your insights can make a difference and help shape future policies that support people living with this condition. 

 🙏  Thanks for sharing your experience!

🔗 https://www.sphinxonline.com/surveyserver/s/EURORDIS75/MH_interface/questionnaire.htm
3 weeks ago

🌍 According to the World Health Organisation (WHO), the substantial impact of social determinants of health (SDH) accounts for up to 55% of health outcomes.

🚨 This means factors such as income, education, housing, access to healthcare, and social support can influence our health as much as medical treatments or disease management do.

🤔 How is this possible? These factors don't cause lupus, but they strongly influence how early it’s diagnosed, how it’s managed, and what outcomes people experience.

💸 For instance, low income may not only impair treatment adherence and disease management but also can potentially worsen long-term prognosis. Irregular treatment and delays in receiving care can lead to greater disease complications and a more difficult disease course over time.

According to our latest review, co-led by Dr Daniel Guimarães de Oliveira and Zoe Karakikla-Mitsakou, people living with lupus often face disparities linked to SDH at every step of their journey, from diagnosis to management and outcomes. For example:

🔹 Those with lower income or education, or from minority backgrounds, often face delayed diagnosis.
🔹 Low health literacy and cultural stigma make treatment adherence harder.
🔹 Living in rural areas limits access to specialised care.
🔹 Financial barriers and social isolation worsen both physical and mental health.

These are just a few examples of the many social determinants of health (SDH) that can influence #lupus. You can find the full picture in our study, which you can find at the end of this post.

‼️ All these factors interact, leading to worse outcomes like higher disease activity, reduced quality of life, and more comorbidities, as shown in Table 1 of our paper (see images).

👉 Understanding and addressing these social factors is key to bringing a better life for people with lupus, until we reach a life without lupus.

Read the full study: www.sciencedirect.com/science/article/pii/S1568997225001478
... See MoreSee Less

🌍 According to the World Health Organisation (WHO), the substantial impact of social determinants of health (SDH) accounts for up to 55% of health outcomes.

🚨 This means factors such as income, education, housing, access to healthcare, and social support can influence our health as much as medical treatments or disease management do.

🤔 How is this possible? These factors dont cause lupus, but they strongly influence how early it’s diagnosed, how it’s managed, and what outcomes people experience.

💸 For instance, low income may not only impair treatment adherence and disease management but also can potentially worsen long-term prognosis. Irregular treatment and delays in receiving care can lead to greater disease complications and a more difficult disease course over time.

According to our latest review, co-led by Dr Daniel Guimarães de Oliveira and Zoe Karakikla-Mitsakou, people living with lupus often face disparities linked to SDH at every step of their journey, from diagnosis to management and outcomes. For example:

🔹 Those with lower income or education, or from minority backgrounds, often face delayed diagnosis.
🔹 Low health literacy and cultural stigma make treatment adherence harder.
🔹 Living in rural areas limits access to specialised care.
🔹 Financial barriers and social isolation worsen both physical and mental health.

These are just a few examples of the many social determinants of health (SDH) that can influence #lupus. You can find the full picture in our study, which you can find at the end of this post.

‼️ All these factors interact, leading to worse outcomes like higher disease activity, reduced quality of life, and more comorbidities, as shown in Table 1 of our paper (see images).

👉 Understanding and addressing these social factors is key to bringing a better life for people with lupus, until we reach a life without lupus.

Read the full study: https://www.sciencedirect.com/science/article/pii/S1568997225001478Image attachmentImage attachment+6Image attachment
LUPUS EUROPE Uniting people with Lupus throughout Europe
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