ERN ReCONNET SLE Survey
The deadline for the ERN ReCONNET RarERN Path Systemic Lupus Erythematous (SLE) survey is Feb. 29th, so there is still time to tell us YOUR story,
moreover now the languages are 14 with with French and German.
Among other initiatives, the ERN ReCONNET is working on the development of organisational patient’s pathway models for rare connective tissue diseases (rCTDs) covered by the Network.
The organisational patient’s pathway models will be developed following the RarERN Path methodology, developed by the ERN ReCONNET, that provides a feasible and pragmatic approach to create a reference organizational model for patients’ care pathways taking advantage of the unique setting of ERNs represented by the large community of experts and patients involved in the Networks. This approach foresees six consecutive phases, each with different and specific aims (for more info please click here.
Based on the successful experience obtained with the Systemic Sclerosis and Ehlers-Danlos Syndromes, ERN ReCONNET developed and co-designed with a patient panel from Lupus Europe, the RarERN Path Systemic Lupus Erythematous (SLE) survey to collect the views and perspectives of SLE patients taking advantage of the narrative medicine principles.
The survey is an efficient tool to reach a high number of patients living with SLE, collect their experiences and opinions with their patient pathways as well as good practices and unmet needs of their community. All this valued information will be addressed and discussed for the development of organizational model pathways based on the RarERN Path methodology.
ERN ReCONNET believes it is important collect and integrate SLE patients’ voices and perspectives from large communities to provides crucial added value on their care.
The idea is giving this opportunity to as many patients as possible. For this reason and avoid/reduce language barriers, thanks to patient panel from Lupus Europe, the survey to collect SLE patient stories was co-designed and translated into 14 different languages: Danish, Dutch, English, Finnish, French (NEW), German (NEW), Greek, Icelandic, Italian, Lithuanian, Polish, Portuguese, Spanish, and Slovak.
The survey is anonymous, it will take you around 10 min to be completed.
Here are the links to the RarERN Path SLE Survey available in NOW 14 different LANGUAGES:
- Danish
- Dutch
- English
- Finnish
- French NEW
- German NEW
- Greek
- Icelandic
- Italian
- Lithuanian
- Polish
- Portuguese
- Spanish
- Slovak
Help us to give SLE patients a voice: Share the link(s) among the people you know are living with SLE
and ask them to share their valuable story.
Join us on social media to reach out as many patients as possible. Be part of the change together with us.
Get in touch with us if you need more details or have any questions: ern.reconnet(at)ao-pisa.toscana.it
More info about the RarERN Path can be found here (hyperlink).
Feel free to download our RarERN Path article to get a deeper knowledge on this innovative methodology:
