30 Years ago, on May 26, 2019, LUPUS EUROPE’s Constitution (then under the name of ELEF) was signed… The European Lupus Federation was born. as we celebrate this anniversary, we asked current and past Chairs to reflect on those years in support of People living with lupus in Europe.

 

Yvonne Norton, Chair from 2002 to 2008: 

26th May 1989, certainly a date to remember – the birth of ELEF – European Lupus Erythematosus Federation with the motto “Uniting People with Lupus throughout Europe”.

September 2008, during the Convention in Palma de Mallorca when I was elected Chair, Council agreed to a name-change – ELEF became LUPUS EUROPE. The motto remained “Uniting People with Lupus throughout Europe”.

Over the years, I have been involved in many projects established by ELEF/LUPUS EUROPE, with the two major ones, from my point of view, being The Common Cause and Unmasking Lupus.

Both of these projects brought member countries together in two unique ways, one investigating the major problems caused by lupus as experienced by patients and the other demonstrating the effects of lupus depicted through art, such as painting, poetry, story-telling and photography. “Uniting People with Lupus throughout Europe”.

With Peter, my husband and former Treasurer of ELEF/LUPUS EUROPE, I have had the opportunity to travel throughout Europe to attend many conventions and conferences and the honour of meeting medics dedicated to easing the debilitating effects of lupus so enabling their patients to live happier and more comfortable lives. However, the greatest joy has come from meeting many, many people who live day-by-day with lupus (in all its forms), who smile and put on a cheerful exterior (while silently screaming with the pain they are feeling) to help others cope with their lupus and know they are not alone, whether they are in the same village, the same town or the same country…

Today, 30 years later, LUPUS EUROPE is still “Uniting People with Lupus throughout Europe”.

Yvonne Norton

 

 

Kirsten Lerström, Chair 2012-2017

Congratulations on the anniversary, young lady!

It has been a wonderful experience to be part of your growing up and development into the fine and vital organization of today. It has been a great honor to share happy as well as sad moments along the way with the most amazing group of dedicated people, I have ever met: the hardworking Trustees, admirable members, the inspiring and motivated colleagues in our global network and the formidable commitment, we have thrived on from our partners in industry and academia.

Thank you to all who has been there to enhance the voice of lupus to be heard!

Best and most heartfelt wishes for the next generation,

Kirsten

 

Jeanette Andersen, Current Chair

Today, May 26th, Lupus Europe can celebrate its 30th anniversary! A lot has happened in those 30 years. In 1989 there were no biologics to treat lupus and a pharma company would never think to involve patient “experts” in the research projects as equal partners. Not only do we now have the first biologic treatment directly approved for lupus, but many more are in the pipeline! At the same time researchers are increasingly asking to involve patients in the research and development of new treatments! The newly established Patient Advisory Network constantly gets requests from researchers, who can see the benefit of adding the patients´ point of view in their work. Hopefully, with this better understanding of the disease (both when it comes to patients and researchers) we will see more successful clinical trials and products with fewer side-effects.

Lupus Europe´s own research shows, that treatment is much more than medication. Patients also consider a healthy lifestyle, a balanced mind and positive surroundings to be part of their treatment. This means, that patients today are no longer simply taking their medication but are taking control over and responsibility of their own lives, which helps to give a higher quality of life and a more effective treatment.

It would not have been possible to reach this point without the continued efforts of the people who came before us. And the struggle is not over yet. Let´s all keep on fighting for A fulfilling life for all people with lupus in Europe, until we have reached a world without lupus!

Jeanette

Live Facebook Feed

Comments Box SVG iconsUsed for the like, share, comment, and reaction icons
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
Send