My first year with Lupus Europe – Sara Badreh

Sara was elected to LUPUS EUROPE’s Board of trustees last October. Here is how she describes her first 8 months as a LUPUS EUROPE trustee:

Sara

After an induction with the various trustees and learning more about LUPUS EUROPE in general, my first big conference was the EULAR PARE Youth conference: Amazing, so big, so glamorous and yet so relaxed and such a friendly environment. It was really the best conference to start with! I learned so much from other patients living with Rheumatic diseases in Europe and the workshops there were so inspiring and engaging. I made some new friends and got thrown straight into networking and learn how to do that in the best way. After the PARE Youth conference I felt like I had gotten some “meat on my bones” and felt ready for my next challenge, which was a Lupus Think Tank in Washington D.C. It was a very intense meeting: just one day where me from Lupus Europe, LFA, Lupus Research Alliance, Lupus and Allied Diseases Association together with a pharmaceutical company and ACR brainstormed to bring different ways of approaching awareness about Lupus and what to focus on regarding treatment for patients.

I then joined the Lupus Academy, a program for Rheumatologist specialized in Lupus where they can ask questions, present difficult cases and get advice from experienced professors. It was very interesting to hear the doctors’ point of view, and feel how much they care about their patients and very humbling to hear their worries when major flares happen and everything is on their shoulders to try to save their patient. If you think that the doctors don’t care about you and only want to keep you on medications and move to the next appointment without even listening, I can tell you that that is not the case!

 My next stop was at the EULAR course for young rheumatologists. This was my first official presentation for LUPUS EROPE in front of educated doctors. I was so nervous… But it went really well. I presented our patient panel outcomes, how patients with Lupus live with the disease in Europe. It was a really fun group of young doctors, I made some new friends and I hope to go back next time.

After that experience, I got selected to take part in the ReConnet steering committee. reConnet is a network for collaboration between scientists, doctors and health care professionals working on connective tissue diseases,  to unify how to diagnose and treat those diseases, and to bring the same standards of care regardless of what country in Europe you are in. It is part of the European Network project (ERN), a a five-year project funded by the European Commission.

My last big event before vacation was the annual EULAR congress. It was big, flashy, extravagant and way way way too much lecture to go to, meetings to attend and networking to do. While the lectures I attended were very interesting, the networking was even better. Everyone and anyone who has anything related to rheumatic diseases were at the congress, the best place for networking and spreading the awareness about Lupus.

After EULAR, it was time for some vacation: Travelling is more exhausting than you would think! And being a trustee also involved board meetings, a round table with pharmaceuticals, medical doctors and other patient organizations,… The journey has really been an intensive crash course (that lasted a bit longer than just a crash course) in how everything works. So with that, I was well equipped to contribute to designing our next 5 years strategic plan.

 I am very excited to be a part of Lupus Europe during this time when we are shaping how the next 5 years are going to be like! If you want to make a difference and really feel the difference you can make in this world, if you are interested in making a difference for people living with Lupus, take up some of these volunteering positions, apply to our board or to be one of our co-opts to leave your mark in this world, knowing that you’re making a difference. I promise, you will Not regret it!

 Sara

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2 hours ago

😨 Did you miss our #EULAR2025 debrief webinar?

😮‍💨 Don't worry! You can watch the full session at your convenience.

Catch up on all the insights shared by many of the presenters, as well as some of our volunteers and PAN members, on our Facebook page!

www.facebook.com/LupusEurope/videos/1257813502412444
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😨 Did you miss our #EULAR2025 debrief webinar?

😮‍💨 Dont worry! You can watch the full session at your convenience.

Catch up on all the insights shared by many of the presenters, as well as some of our volunteers and PAN members, on our Facebook page!

https://www.facebook.com/LupusEurope/videos/1257813502412444
3 days ago

‼️ According to our "Living with Lupus in 2020" survey, 𝐔𝐕 𝐬𝐞𝐧𝐬𝐢𝐭𝐢𝐯𝐢𝐭𝐲 𝐫𝐚𝐧𝐤𝐬 𝐚𝐦𝐨𝐧𝐠 𝐭𝐡𝐞 𝐦𝐨𝐬𝐭 𝐜𝐨𝐦𝐦𝐨𝐧 𝐚𝐧𝐝 𝐛𝐨𝐭𝐡𝐞𝐫𝐬𝐨𝐦𝐞 𝐬𝐲𝐦𝐩𝐭𝐨𝐦𝐬 for those with lupus.

😱 In fact, 𝟔𝟖.𝟓% of respondents reported experiencing sun sensitivity, making it a significant concern for many.

💥 UV sensitivity can greatly limit daily activities and impact the quality of life for people with lupus. Here are a few examples:

🏗️ 𝐎𝐮𝐭𝐝𝐨𝐨𝐫 𝐣𝐨𝐛𝐬: Those who work outdoors, such as in construction, agriculture, or any job requiring prolonged sun exposure, often struggle to manage their symptoms.

The need to stay covered and protected from the sun can make these jobs particularly challenging.

🏖️ 𝐅𝐚𝐦𝐢𝐥𝐲 𝐚𝐧𝐝 𝐬𝐨𝐜𝐢𝐚𝐥 𝐥𝐢𝐟𝐞: UV light can significantly impact social and family life for individuals with lupus.

Activities such as spending a day at the beach, attending park outings, enjoying barbecues, and participating in festivals or outdoor events become challenging due to the need for constant sun protection.

This often means seeking shade, wearing protective clothing, and applying sunscreen regularly, which can limit spontaneity and enjoyment.

For some patients, the sensitivity to UV light is so severe that they cannot attend these events at all, as exposure could trigger a lupus flare, further limiting their ability to engage in social and family activities.

🔊 Join us this month as we share tips and strategies to manage UV sensitivity and protect yourself from the sun.

😊 Share your experiences and how you #KickLupus & UV light in your daily life
... See MoreSee Less

‼️ According to our Living with Lupus in 2020 survey, 𝐔𝐕 𝐬𝐞𝐧𝐬𝐢𝐭𝐢𝐯𝐢𝐭𝐲 𝐫𝐚𝐧𝐤𝐬 𝐚𝐦𝐨𝐧𝐠 𝐭𝐡𝐞 𝐦𝐨𝐬𝐭 𝐜𝐨𝐦𝐦𝐨𝐧 𝐚𝐧𝐝 𝐛𝐨𝐭𝐡𝐞𝐫𝐬𝐨𝐦𝐞 𝐬𝐲𝐦𝐩𝐭𝐨𝐦𝐬 for those with lupus. 

😱 In fact, 𝟔𝟖.𝟓% of respondents reported experiencing sun sensitivity, making it a significant concern for many.

💥 UV sensitivity can greatly limit daily activities and impact the quality of life for people with lupus. Here are a few examples:

🏗️ 𝐎𝐮𝐭𝐝𝐨𝐨𝐫 𝐣𝐨𝐛𝐬: Those who work outdoors, such as in construction, agriculture, or any job requiring prolonged sun exposure, often struggle to manage their symptoms. 

The need to stay covered and protected from the sun can make these jobs particularly challenging.

🏖️ 𝐅𝐚𝐦𝐢𝐥𝐲 𝐚𝐧𝐝 𝐬𝐨𝐜𝐢𝐚𝐥 𝐥𝐢𝐟𝐞: UV light can significantly impact social and family life for individuals with lupus. 

Activities such as spending a day at the beach, attending park outings, enjoying barbecues, and participating in festivals or outdoor events become challenging due to the need for constant sun protection. 

This often means seeking shade, wearing protective clothing, and applying sunscreen regularly, which can limit spontaneity and enjoyment. 

For some patients, the sensitivity to UV light is so severe that they cannot attend these events at all, as exposure could trigger a lupus flare, further limiting their ability to engage in social and family activities. 

🔊 Join us this month as we share tips and strategies to manage UV sensitivity and protect yourself from the sun. 

😊 Share your experiences and how you #KickLupus & UV light in your daily lifeImage attachment
6 days ago

🟣 Phase 2 of LUPUS-ALERT is now complete!

Thanks to the incredible contributions of patients and healthcare professionals from around the world, we are one step closer to creating a tool that will screen for vulnerabilities people may face during lupus care.

🔍 LUPUS-ALERT is a project co-developed by patients and clinicians that will systematically screen for vulnerabilities that can impact lupus management:

🔷 Associated conditions
🔷 Comorbidities
🔷 Social and economic context
🔷 Challenges and barriers — like language, access to medication, or distance to care

🙌 Thank you to everyone who has helped shape this project so far. Your input is helping shape a more equitable and person-centred future for lupus care.

💜 A very special thank you to Prof Laurent Arnaud and Dr Guimarães de Oliveira for their commitment and dedication throughout this process!

📌 Stay tuned — more to come soon!
... See MoreSee Less

🟣 Phase 2 of LUPUS-ALERT is now complete!

Thanks to the incredible contributions of patients and healthcare professionals from around the world, we are one step closer to creating a tool that will screen for vulnerabilities people may face during lupus care.

🔍 LUPUS-ALERT is a project co-developed by patients and clinicians that will systematically screen for vulnerabilities that can impact lupus management:

🔷 Associated conditions
🔷 Comorbidities
🔷 Social and economic context
🔷 Challenges and barriers — like language, access to medication, or distance to care

🙌 Thank you to everyone who has helped shape this project so far. Your input is helping shape a more equitable and person-centred future for lupus care.

💜 A very special thank you to Prof Laurent Arnaud and Dr Guimarães de Oliveira for their commitment and dedication throughout this process!

📌 Stay tuned — more to come soon!
1 week ago

🌟Thank you to all who attended our #EULAR2025 debrief webinar!

🙌 Especially to our presenters, volunteers & PAN members who shared their insights & experiences.

Stay tuned for more news and updates & don't forget to subscribe to our newsletter! www.lupus-europe.org/emails/
... See MoreSee Less

LUPUS EUROPE Uniting people with Lupus throughout Europe
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