EPF is launching a second consultation on a draft position on defining and measuring access to healthcare. The position paper was developed with the working group on access. The first consultation was held in September/October.

Lupus Europe is involved in this working group and your input to the consultation would be much appreciated if you haven’t already had an opportunity to reply on this very important subject.

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39 minutes ago
LUPUS EUROPE

๐Ÿ”Š Few days left for #RareDiseaseDay!

๐ŸŒŽ Join us and raise much-needed awareness to get early diagnoses for people who live with a #raredisease.

โฌ‡๏ธ You can download the materials done bRare Disease Dayay at buff.ly/4bMe753

#ShareYourColours
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๐Ÿ”Š Few days left for #RareDiseaseDay!

๐ŸŒŽ Join us and raise much-needed awareness to get early diagnoses for people who live with a #RareDisease.

โฌ‡๏ธ  You can download the materials done bRare Disease Dayay at https://buff.ly/4bMe753

#ShareYourColours
5 days ago
LUPUS EUROPE

๐Ÿ”Š Calling all #lupus patients!

๐Ÿ—ฃ๏ธYour voice matters, and we want to hear your story! ERN RECONNETET is on a mission to collect the invaluable experiences of European #SLE patients, and we need your input to make a difference ๐ŸŒ.

๐Ÿ“ฃ ERN ReCONNET has designed a survey specifically tailored for systemic lupus erythematosus patients.

This survey is a unique opportunity for you to share your journey, perceptions, and point of view regarding your care pathway.

๐ŸŽฏ This initiative aims to shed light on how patients perceive their lupus journey, raising awareness about the challenges along the way.

๐ŸŒŸ Your stories will not only contribute to understanding the patient experience but could also help shape future actions to enhance patient care across Europe.

๐Ÿ“š The stories collected will be compiled into an anonymous book that will be published by ERN ReCONNET and/or Lupus Europe, serving as a powerful resource for patients, clinicians, and advocates alike.

๐Ÿ‘‰ If you're a Lupus patient, we invite you to participate in the survey, available in 14 languages.

๐Ÿ‡ฉ๐Ÿ‡ฐ Danish: bit.ly/SLEStories_Danish
๐Ÿ‡ณ๐Ÿ‡ฑ Dutch: bit.ly/SLEStories_Dutch2
๐Ÿ‡ฌ๐Ÿ‡ง English: buff.ly/3vbkRss
๐Ÿ‡ซ๐Ÿ‡ฎ Finnish: bit.ly/SLEStories_Finnish
๐Ÿ‡ฌ๐Ÿ‡ท Greek: bit.ly/SLEStories_Greek
๐Ÿ‡ฎ๐Ÿ‡ธ Icelandic: bit.ly/SLEStories_Icelandic
๐Ÿ‡ฎ๐Ÿ‡น Italian: bit.ly/SLEStories_Italian
๐Ÿ‡ฑ๐Ÿ‡น Lithuanian: bit.ly/SLEStories_Lithuanian
๐Ÿ‡ต๐Ÿ‡ฑ Polish: bit.ly/SLEStories_Polish
๐Ÿ‡ต๐Ÿ‡ฑ Portuguese: bit.ly/SLEStories_Portuguese
๐Ÿ‡ช๐Ÿ‡ธ Spanish: bit.ly/SLEStories_Spanish
๐Ÿ‡ธ๐Ÿ‡ฐ Slovak: bit.ly/SLEStories_Slovak
๐Ÿ‡ซ๐Ÿ‡ท French: ec.europa.eu/eusurvey/runner/SLE_RarERNPath_stories2023_French
๐Ÿ‡ฉ๐Ÿ‡ช German: ec.europa.eu/eusurvey/runner/SLE_RarERNPath_stories2023_German

๐Ÿ’ช Let your voice be heard! Join us in making a positive impact on lupus care in Europe!

๐ŸŒŸ Lupus Europe has proudly contributed to this important project that aims to give a voice to the Lupus community across Europe.

Our collaboration with ERN ReCONNET underscores our commitment to improving the quality of care and understanding the unique journey of lupus patients.
... See MoreSee Less

๐Ÿ”Š Calling all #lupus patients!

๐Ÿ—ฃ๏ธYour voice matters, and we want to hear your story! ERN RECONNETET is on a mission to collect the invaluable experiences of European #SLE patients, and we need your input to make a difference ๐ŸŒ.

๐Ÿ“ฃ ERN ReCONNET has designed a survey specifically tailored for systemic lupus erythematosus patients. 

This survey is a unique opportunity for you to share your journey, perceptions, and point of view regarding your care pathway.

๐ŸŽฏ This initiative aims to shed light on how patients perceive their lupus journey, raising awareness about the challenges along the way. 

๐ŸŒŸ Your stories will not only contribute to understanding the patient experience but could also help shape future actions to enhance patient care across Europe.

๐Ÿ“š The stories collected will be compiled into an anonymous book that will be published by ERN ReCONNET and/or Lupus Europe, serving as a powerful resource for patients, clinicians, and advocates alike.

๐Ÿ‘‰ If youre a Lupus patient, we invite you to participate in the survey, available in 14 languages. 

๐Ÿ‡ฉ๐Ÿ‡ฐ Danish: https://bit.ly/SLEStories_Danish 
๐Ÿ‡ณ๐Ÿ‡ฑ Dutch: https://bit.ly/SLEStories_Dutch2 
๐Ÿ‡ฌ๐Ÿ‡ง English: https://buff.ly/3vbkRss 
๐Ÿ‡ซ๐Ÿ‡ฎ Finnish: https://bit.ly/SLEStories_Finnish 
๐Ÿ‡ฌ๐Ÿ‡ท Greek: https://bit.ly/SLEStories_Greek 
๐Ÿ‡ฎ๐Ÿ‡ธ Icelandic: https://bit.ly/SLEStories_Icelandic 
๐Ÿ‡ฎ๐Ÿ‡น Italian: https://bit.ly/SLEStories_Italian 
๐Ÿ‡ฑ๐Ÿ‡น Lithuanian: https://bit.ly/SLEStories_Lithuanian 
๐Ÿ‡ต๐Ÿ‡ฑ Polish: https://bit.ly/SLEStories_Polish 
๐Ÿ‡ต๐Ÿ‡ฑ Portuguese: https://bit.ly/SLEStories_Portuguese 
๐Ÿ‡ช๐Ÿ‡ธ Spanish: https://bit.ly/SLEStories_Spanish 
๐Ÿ‡ธ๐Ÿ‡ฐ Slovak: https://bit.ly/SLEStories_Slovak 
๐Ÿ‡ซ๐Ÿ‡ท French: https://ec.europa.eu/eusurvey/runner/SLE_RarERNPath_stories2023_French 
๐Ÿ‡ฉ๐Ÿ‡ช German: https://ec.europa.eu/eusurvey/runner/SLE_RarERNPath_stories2023_German 

๐Ÿ’ช Let your voice be heard! Join us in making a positive impact on lupus care in Europe!

๐ŸŒŸ Lupus Europe has proudly contributed to this important project that aims to give a voice to the Lupus community across Europe. 

Our collaboration with ERN ReCONNET underscores our commitment to improving the quality of care and understanding the unique journey of lupus patients.
6 days ago
LUPUS EUROPE

๐ŸŒŸ Celebrating Silvia's Remarkable Achievement! ๐ŸŒŸ

We are thrilled to announce that Silvia, who is an honorary member of the Lupus Europe Patient Advisory Network (PAN), has been honoured with the prestigiouEURORDIS-Rare Diseases Europepe 2024 Black Pearl Award for her exceptional volunteerism! ๐Ÿ†

Silvia's impactful work at tAsociaciรณn Espaรฑola Sรญndrome Antifosfolipรญdico - SAF Espaรฑaaรฑa (APS Spain) has made a profound difference in the lives of many, while her representation of antiphospholipid syndrome in European networks and committees liERN RECONNETNET and the European Alliance of Associations for Rheumatologyโ€™s PARE patient committee showcases her unwavering commitment to advocacy.

Silvia's journey is one of inspiration and empowerment, driven by a deep personal connection to her cause. We invite you to learn more about her incredible story and the invaluable contributions she continues to make โคต๏ธ

www.eurordis.org/black-pearl-awards-2024-adela-and-silvia/

Let's join together in celebrating Silvia's well-deserved recognition! ๐ŸŽ‰
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๐ŸŒŸ Celebrating Silvias Remarkable Achievement! ๐ŸŒŸ

We are thrilled to announce that Silvia, who is an honorary member of the Lupus Europe Patient Advisory Network (PAN), has been honoured with the prestigiouEURORDIS-Rare Diseases Europepe 2024 Black Pearl Award for her exceptional volunteerism! ๐Ÿ†

Silvias impactful work at tAsociaciรณn Espaรฑola Sรญndrome Antifosfolipรญdico - SAF Espaรฑaaรฑa (APS Spain) has made a profound difference in the lives of many, while her representation of antiphospholipid syndrome in European networks and committees liERN RECONNETNET and the European Alliance of Associations for Rheumatologyโ€™s PARE patient committee showcases her unwavering commitment to advocacy.

Silvias journey is one of inspiration and empowerment, driven by a deep personal connection to her cause. We invite you to learn more about her incredible story and the invaluable contributions she continues to make โคต๏ธ 

https://www.eurordis.org/black-pearl-awards-2024-adela-and-silvia/ 

Lets join together in celebrating Silvias well-deserved recognition! ๐ŸŽ‰
LUPUS EUROPE Uniting people with Lupus throughout Europe
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