Dear Patient Organisations,

we hope this Email finds you well.

We are contacting you with regards to an on-line survey on ethical, legal and privacy issues related to rare and complex connective tissue diseases.

The European Reference Network on rare and complex connective tissue diseases (ERN ReCONNET) is a Network of Healthcare Providers and patients that aims at improving the clinical approach to rare and complex connective tissue diseases, promoting an improvement of the quality of the specialized care provided to patients, the activity of the physicians,  the empowerment of patients and by globally promoting high quality of care, sharing of the experience and the interaction across Europe.

We have recently developed, together with the precious help of the ERN ReCONNET European Patient Advocacy Group (ePAG), a survey to collect the feedback of the community of patients affected by rare and complex connective tissue diseases on different aspects related to ethical, legal and privacy issue, and on cross-border healthcare.

Thanks to our ePAGs, the survey is available in different languages: Dutch, English, French, Italian, German, Portuguese and Spanish, you can find the links below.

Dutch version: https://goo.gl/forms/jnhl45rosttSLXUt1

English: https://goo.gl/forms/eK4v5ziNGJqRkRsr2 

French: https://goo.gl/forms/q6mkhu4cl3k5YKZq1

Italian: https://goo.gl/forms/ps9uzr4piTdperyK2

German: https://goo.gl/forms/TNZRBvCFFZ3tIHon1

Portuguese: https://goo.gl/forms/UMV0tvXUFBW0wp0T2

Spanish: https://goo.gl/forms/MHgBfBRjlLVMVZeJ3

We would really appreciate if you could disseminate the link to the survey among your members and contacts, in order to collect the majority of feedback across the patients community. The survey is available until 28th January and the results of this survey, together with the results of the previous surveys, will be presented in our website (http://reconnet.ern-net.eu/).

We thank you in advance for your support and your active participation to the survey.

Please don’t hesitate to contact us should you have any questions on the survey or on ERN ReCONNET.

Kind regards,

ERN ReCONNET Team

More info on ERNs: https://ec.europa.eu/health/ern_en

More info on ePAG: https://www.eurordis.org/content/epags