ERN ReCONNET Stories
Are you a patient living with a rare or low-prevalence connective tissue disease?
Tell your story!
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 other diseases covered by the Network (Systemic Sclerosis, Ehlers-Danlos Syndromes and SLE), ERN ReCONNET developed and co-designed with a patient panel, the RarERN Path survey to collect the views and perspectives of patients living with rare and low prevalence connective tissue diseases taking advantage of the narrative medicine principles.
We are looking for people living with these diseases/conditions:
- Antiphospholipid Syndrome (APS)
- Idiopathic Inflammatory Myopathies (IMM)
- IgG4-Related Diseases (IgG4-RD)
- Mixed Connective Tissue Diseases (MCTD)
- Relapsing Polychondritis (RP)
- Sjögren’s Syndrome (SS)
- Undifferentiated Connective Tissue Diseases (UCTD)
The survey is an efficient tool to reach a high number of patients living with these conditions, 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 to collect and integrate patients’ voices and perspectives from large communities to provide crucial added value to their care.
The idea is to give this opportunity to as many patients as possible. For this reason and to avoid/reduce language barriers, thanks to the patient panel, the survey to collect patient stories was co-designed and translated into 10 different languages: Czech, Dutch, English, French, German, Italian, Polish, Portuguese, Romanian, and Spanish.
The survey is anonymous, it will take you around 10 min to complete.
Here are the links to the RarERN Path Survey available in NOW 10 different LANGUAGES:
- Czech: https://bit.ly/ERN_CZ
- Dutch: https://bit.ly/ERN_NL
- English: https://bit.ly/ERN_EN
- French: https://bit.ly/ERN_FR
- German: https://bit.ly/ERN_DE
- Italian: https://bit.ly/ERN_IT
- Polish:https://bit.ly/ERN_PL
- Portuguese: https://bit.ly/ERN_PT
- Romanian: https://bit.ly/ERN_RO
- Spanish: https://bit.ly/ERN_ES
Help us to give patients a voice: Share the link(s) among the people you know are living with rare and low-prevalence connective tissue diseases and ask them to share their valuable stories.
Join us on social media to reach out to 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 of this methodology:
