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 days ago
LUPUS EUROPE

#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

rarediseases.org/
... See MoreSee Less

#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 

https://rarediseases.org/
2 days ago
LUPUS EUROPE

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 Rare Disease Daye DayEURORDIS-Rare Diseases Europeurope, 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!

#rarediseaseday2024 #ShareYourColours
... See MoreSee Less

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 Rare Disease Daye DayEURORDIS-Rare Diseases Europeurope, 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! 

#rarediseaseday2024  #ShareYourColoursImage attachmentImage attachment+2Image attachment
3 days ago
LUPUS EUROPE

🌟 𝗬𝗼𝘂𝗿 𝗩𝗼𝗶𝗰𝗲 𝗠𝗮𝘁𝘁𝗲𝗿𝘀: 𝗝𝗼𝗶𝗻 𝘁𝗵𝗲 𝗥𝗮𝗿𝗘𝗥𝗡 𝗣𝗮𝘁𝗵 #𝗟𝘂𝗽𝘂𝘀 𝗦𝘂𝗿𝘃𝗲𝘆 🌟

🦋 Each journey with lupus is unique, yet there are shared paths: the initial confusion at the first symptoms, the quest for a diagnosis... But we know every lupuERN RECONNETs the power to initiate change.

🤝 ERN RECONNET and Lupus Europe have collaborated on the RarERN Path #lupus project, aimed at capturing and understanding the patient experiences across Europe.

Your story is crucial to reshape and enhance the care and attention we, as lupus patients, receive.

📢 𝗪𝗲 𝗡𝗲𝗲𝗱 𝗬𝗼𝘂𝗿 𝗩𝗼𝗶𝗰𝗲❗

If you're living with lupus 𝗶𝗻 𝗘𝘂𝗿𝗼𝗽𝗲, your participation is invaluable.

By sharing your patient pathway, you can contribute to a larger effort to understand how people experience the condition, their pathways and ultimately, to try and improve healthcare services.

🔗 𝗔𝘃𝗮𝗶𝗹𝗮𝗯𝗹𝗲 𝗶𝗻 𝟭𝟰 𝗹𝗮𝗻𝗴𝘂𝗮𝗴𝗲𝘀:

🇩🇰Danish: bit.ly/SLEStories_Danish
🇳🇱Dutch: bit.ly/SLEStories_Dutch2
🇬🇧English: buff.ly/3uExnRz
🇫🇮Finnish: bit.ly/SLEStories_Finnish
🇬🇷Greek: bit.ly/SLEStories_Greek
🇮🇸Icelandic: bit.ly/SLEStories_Icelandic
🇮🇹Italian: bit.ly/SLEStories_Italian
🇱🇹Lithuanian: bit.ly/SLEStories_Lithuanian
🇵🇱Polish: bit.ly/SLEStories_Polish
🇵🇹 Portuguese: bit.ly/SLEStories_Portuguese
🇪🇸Spanish: bit.ly/SLEStories_Spanish
🇸🇰Slovak: bit.ly/SLEStories_Slovak
🇫🇷French: buff.ly/3IfuJVf
🇩🇪German: buff.ly/3IfHf7e

Your story can lead to significant shifts in lupus care. Let's come together to make a difference. Your experience, your opinion, your struggles, and your triumphs can help shape a better future for all lupus patients across Europe.

𝗧𝗵𝗲 𝗱𝗲𝗮𝗱𝗹𝗶𝗻𝗲 𝗶𝘀 𝘁𝗼𝗺𝗼𝗿𝗿𝗼𝘄❗
... See MoreSee Less

🌟 𝗬𝗼𝘂𝗿 𝗩𝗼𝗶𝗰𝗲 𝗠𝗮𝘁𝘁𝗲𝗿𝘀: 𝗝𝗼𝗶𝗻 𝘁𝗵𝗲 𝗥𝗮𝗿𝗘𝗥𝗡 𝗣𝗮𝘁𝗵 #𝗟𝘂𝗽𝘂𝘀 𝗦𝘂𝗿𝘃𝗲𝘆 🌟

🦋 Each journey with lupus is unique, yet there are shared paths: the initial confusion at the first symptoms, the quest for a diagnosis...  But we know every lupuERN RECONNETs the power to initiate change.

🤝 ERN RECONNET and Lupus Europe have collaborated on the RarERN Path #Lupus project, aimed at capturing and understanding the patient experiences across Europe.

Your story is crucial to reshape and enhance the care and attention we, as lupus patients, receive.

📢 𝗪𝗲 𝗡𝗲𝗲𝗱 𝗬𝗼𝘂𝗿 𝗩𝗼𝗶𝗰𝗲❗

If youre living with lupus 𝗶𝗻 𝗘𝘂𝗿𝗼𝗽𝗲, your participation is invaluable.

By sharing your patient pathway, you can contribute to a larger effort to understand how people experience the condition, their pathways and ultimately, to try and  improve healthcare services.

🔗 𝗔𝘃𝗮𝗶𝗹𝗮𝗯𝗹𝗲 𝗶𝗻 𝟭𝟰 𝗹𝗮𝗻𝗴𝘂𝗮𝗴𝗲𝘀:

🇩🇰Danish: https://bit.ly/SLEStories_Danish 
🇳🇱Dutch: https://bit.ly/SLEStories_Dutch2 
🇬🇧English: https://buff.ly/3uExnRz 
🇫🇮Finnish: https://bit.ly/SLEStories_Finnish 
🇬🇷Greek: https://bit.ly/SLEStories_Greek
🇮🇸Icelandic: https://bit.ly/SLEStories_Icelandic
🇮🇹Italian: https://bit.ly/SLEStories_Italian
🇱🇹Lithuanian: https://bit.ly/SLEStories_Lithuanian
🇵🇱Polish: https://bit.ly/SLEStories_Polish
🇵🇹 Portuguese: https://bit.ly/SLEStories_Portuguese
🇪🇸Spanish: https://bit.ly/SLEStories_Spanish
🇸🇰Slovak: https://bit.ly/SLEStories_Slovak
🇫🇷French: https://buff.ly/3IfuJVf 
🇩🇪German: https://buff.ly/3IfHf7e 

Your story can lead to significant shifts in lupus care. Lets come together to make a difference. Your experience, your opinion, your struggles, and your triumphs can help shape a better future for all lupus patients across Europe. 

𝗧𝗵𝗲 𝗱𝗲𝗮𝗱𝗹𝗶𝗻𝗲 𝗶𝘀 𝘁𝗼𝗺𝗼𝗿𝗿𝗼𝘄❗
3 days ago
LUPUS EUROPE

🚨 Tomorrow is #RareDiseaseDay!

🙌 Let's show our support to all those organisations that, like us, work every day to improve patients' quality of life.

🔊 Share the officiRare Disease DayDay campaign video and help us raise awareness of the importance of an early diagnosis, equitable opportunities and access to healthcare.

#ShareYourColours

buff.ly/49NLliU
... See MoreSee Less

🚨 Tomorrow is #RareDiseaseDay!

🙌 Lets show our support to all those organisations that, like us, work every day to improve patients quality of life. 

🔊 Share the officiRare Disease DayDay campaign video and help us raise awareness of the importance of an early diagnosis, equitable opportunities and access to healthcare.

#ShareYourColours 

https://buff.ly/49NLliU
LUPUS EUROPE Uniting people with Lupus throughout Europe
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