Interview with Jan Geisler, director of EUPATI, on the Patients’ Academy. He answers questions such as: “What is the goal of EUPATI?” “Why did you feel it was necessary to create such an academy?” “What is the profile of the students enrolled in the EUPATI course?” “What will they (the students) learn?” To view the video please click here.

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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!

๐Ÿšจ There are over 300 million people who live with a #raredisease in #europe.

๐ŸŒŽ Today, we join our fellow patient organisations that work towards a better life for people with rare diseases and their families.

๐Ÿ”ด Some facts about #RAREDISEASES:

1๏ธโƒฃ There are more than 6000 identified rare diseases.

2๏ธโƒฃ 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.

3๏ธโƒฃ 72% of genetic diseases are genetic, although #lupus is not one of them.
๐Ÿ‘‰ 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.

4๏ธโƒฃ ๐Ÿ‘ถNeonatal #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.

5๏ธโƒฃ 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 ๐Ÿ™Œ.

Thank you for your support on this #RareDiseaseDay!

#rarediseaseday2024 #ShareYourColours
... See MoreSee Less

Today is rare disease day!

๐Ÿšจ There are over 300 million people who live with a #RareDisease in #Europe.

๐ŸŒŽ Today, we join our fellow patient organisations that work towards a better life for people with rare diseases and their families.

๐Ÿ”ด Some facts about #RareDiseases: 

1๏ธโƒฃ There are more than 6000 identified rare diseases.

2๏ธโƒฃ  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.

3๏ธโƒฃ 72% of genetic diseases are genetic, although #lupus is not one of them. 
๐Ÿ‘‰ 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.

4๏ธโƒฃ ๐Ÿ‘ถNeonatal #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. 

5๏ธโƒฃ 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 ๐Ÿ™Œ.

Thank you for your support on this #RareDiseaseDay! 

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

๐ŸŒŸ ๐—ฌ๐—ผ๐˜‚๐—ฟ ๐—ฉ๐—ผ๐—ถ๐—ฐ๐—ฒ ๐— ๐—ฎ๐˜๐˜๐—ฒ๐—ฟ๐˜€: ๐—๐—ผ๐—ถ๐—ป ๐˜๐—ต๐—ฒ ๐—ฅ๐—ฎ๐—ฟ๐—˜๐—ฅ๐—ก ๐—ฃ๐—ฎ๐˜๐—ต #๐—Ÿ๐˜‚๐—ฝ๐˜‚๐˜€ ๐—ฆ๐˜‚๐—ฟ๐˜ƒ๐—ฒ๐˜† ๐ŸŒŸ

๐Ÿฆ‹ 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.

๐Ÿค 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.

๐Ÿ“ข ๐—ช๐—ฒ ๐—ก๐—ฒ๐—ฒ๐—ฑ ๐—ฌ๐—ผ๐˜‚๐—ฟ ๐—ฉ๐—ผ๐—ถ๐—ฐ๐—ฒโ—

If you're living with lupus ๐—ถ๐—ป ๐—˜๐˜‚๐—ฟ๐—ผ๐—ฝ๐—ฒ, 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.

๐Ÿ”— ๐—”๐˜ƒ๐—ฎ๐—ถ๐—น๐—ฎ๐—ฏ๐—น๐—ฒ ๐—ถ๐—ป ๐Ÿญ๐Ÿฐ ๐—น๐—ฎ๐—ป๐—ด๐˜‚๐—ฎ๐—ด๐—ฒ๐˜€:

๐Ÿ‡ฉ๐Ÿ‡ฐDanish: bit.ly/SLEStories_Danish
๐Ÿ‡ณ๐Ÿ‡ฑDutch: bit.ly/SLEStories_Dutch2
๐Ÿ‡ฌ๐Ÿ‡งEnglish: buff.ly/3uExnRz
๐Ÿ‡ซ๐Ÿ‡ฎFinnish: bit.ly/SLEStories_Finnish
๐Ÿ‡ฌ๐Ÿ‡ทGreek: bit.ly/SLEStories_Greek
๐Ÿ‡ฎ๐Ÿ‡ธIcelandic: bit.ly/SLEStories_Icelandic
๐Ÿ‡ฎ๐Ÿ‡นItalian: bit.ly/SLEStories_Italian
๐Ÿ‡ฑ๐Ÿ‡นLithuanian: bit.ly/SLEStories_Lithuanian
๐Ÿ‡ต๐Ÿ‡ฑPolish: bit.ly/SLEStories_Polish
๐Ÿ‡ต๐Ÿ‡น Portuguese: bit.ly/SLEStories_Portuguese
๐Ÿ‡ช๐Ÿ‡ธSpanish: bit.ly/SLEStories_Spanish
๐Ÿ‡ธ๐Ÿ‡ฐSlovak: bit.ly/SLEStories_Slovak
๐Ÿ‡ซ๐Ÿ‡ทFrench: buff.ly/3IfuJVf
๐Ÿ‡ฉ๐Ÿ‡ชGerman: 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.

๐—ง๐—ต๐—ฒ ๐—ฑ๐—ฒ๐—ฎ๐—ฑ๐—น๐—ถ๐—ป๐—ฒ ๐—ถ๐˜€ ๐˜๐—ผ๐—บ๐—ผ๐—ฟ๐—ฟ๐—ผ๐˜„โ—
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๐ŸŒŸ ๐—ฌ๐—ผ๐˜‚๐—ฟ ๐—ฉ๐—ผ๐—ถ๐—ฐ๐—ฒ ๐— ๐—ฎ๐˜๐˜๐—ฒ๐—ฟ๐˜€: ๐—๐—ผ๐—ถ๐—ป ๐˜๐—ต๐—ฒ ๐—ฅ๐—ฎ๐—ฟ๐—˜๐—ฅ๐—ก ๐—ฃ๐—ฎ๐˜๐—ต #๐—Ÿ๐˜‚๐—ฝ๐˜‚๐˜€ ๐—ฆ๐˜‚๐—ฟ๐˜ƒ๐—ฒ๐˜† ๐ŸŒŸ

๐Ÿฆ‹ 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.

๐Ÿค 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.

๐Ÿ“ข ๐—ช๐—ฒ ๐—ก๐—ฒ๐—ฒ๐—ฑ ๐—ฌ๐—ผ๐˜‚๐—ฟ ๐—ฉ๐—ผ๐—ถ๐—ฐ๐—ฒโ—

If youre living with lupus ๐—ถ๐—ป ๐—˜๐˜‚๐—ฟ๐—ผ๐—ฝ๐—ฒ, 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.

๐Ÿ”— ๐—”๐˜ƒ๐—ฎ๐—ถ๐—น๐—ฎ๐—ฏ๐—น๐—ฒ ๐—ถ๐—ป ๐Ÿญ๐Ÿฐ ๐—น๐—ฎ๐—ป๐—ด๐˜‚๐—ฎ๐—ด๐—ฒ๐˜€:

๐Ÿ‡ฉ๐Ÿ‡ฐDanish: https://bit.ly/SLEStories_Danish 
๐Ÿ‡ณ๐Ÿ‡ฑDutch: https://bit.ly/SLEStories_Dutch2 
๐Ÿ‡ฌ๐Ÿ‡งEnglish: https://buff.ly/3uExnRz 
๐Ÿ‡ซ๐Ÿ‡ฎFinnish: https://bit.ly/SLEStories_Finnish 
๐Ÿ‡ฌ๐Ÿ‡ทGreek: https://bit.ly/SLEStories_Greek
๐Ÿ‡ฎ๐Ÿ‡ธIcelandic: https://bit.ly/SLEStories_Icelandic
๐Ÿ‡ฎ๐Ÿ‡นItalian: https://bit.ly/SLEStories_Italian
๐Ÿ‡ฑ๐Ÿ‡นLithuanian: https://bit.ly/SLEStories_Lithuanian
๐Ÿ‡ต๐Ÿ‡ฑPolish: https://bit.ly/SLEStories_Polish
๐Ÿ‡ต๐Ÿ‡น Portuguese: https://bit.ly/SLEStories_Portuguese
๐Ÿ‡ช๐Ÿ‡ธSpanish: https://bit.ly/SLEStories_Spanish
๐Ÿ‡ธ๐Ÿ‡ฐSlovak: https://bit.ly/SLEStories_Slovak
๐Ÿ‡ซ๐Ÿ‡ทFrench: https://buff.ly/3IfuJVf 
๐Ÿ‡ฉ๐Ÿ‡ชGerman: 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. 

๐—ง๐—ต๐—ฒ ๐—ฑ๐—ฒ๐—ฎ๐—ฑ๐—น๐—ถ๐—ป๐—ฒ ๐—ถ๐˜€ ๐˜๐—ผ๐—บ๐—ผ๐—ฟ๐—ฟ๐—ผ๐˜„โ—
3 days ago
LUPUS EUROPE

๐Ÿšจ Tomorrow is #RareDiseaseDay!

๐Ÿ™Œ Let's show our support to all those organisations that, like us, work every day to improve patients' quality of life.

๐Ÿ”Š 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

๐Ÿšจ Tomorrow is #RareDiseaseDay!

๐Ÿ™Œ Lets show our support to all those organisations that, like us, work every day to improve patients quality of life. 

๐Ÿ”Š 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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