in only 2 days, the INTEGRATE and ERN ReCONNET surveys will be closed. Yet, we miss feedback from several countries, and only have 1 or 2 answers from others. It would really help our understanding of lupus and the interactions with Doctors if we had more answers from more locations. please help us gather that extra feedback by answering the surveys if you have not done yet, and by forwarding to your lupus friends… The information you will provide will be analysed by a multi-functional team, in which LUPUS EUROPE is represented, to trigger action, influence projects and/or guide decisions.
The survey is part of the INTEGRATE project (www.integrate-sle.eu), a project funded by the European Commission involving the University of Pisa (Italy), the University of Dusseldorf (Germany) and the Sant’ Anna School of Advanced Studies (Italy).
The aim of the project is to map the needs and expectations of patients with SLE and the rheumatologists involved in their care and management in order to design strategies integrating both points of view, with the final goal to improve management and self-management of the disease.
As SLE patient you have been invited to participate to the survey, through the LUPUS EUROPE association or your clinician, to give voice to patients with SLE.
To complete the survey (in English, Italian or German (revised)), please follow this link: https://www.integrate-sle.eu
Thank you in advance for providing your feedback by 15th February 2019!
Your participation and your time will be really appreciated and it will surely contribute to the success of the initiative.
If you have some timle left, also complete the ERN RECONNET Survey :
RECONNET is the European Reference Network on rare and complex connective tissue diseases. It brings together Healthcare Providers and patients to improve the quality of care, the activity of the physicians, and the empowerment of patients across Europe. The survey collects simple feedback on different aspects related to ethical, legal and privacy issue, and on cross-border healthcare. It is available in Dutch, English, French, Italian, German, Portuguese and Spanish:
Dutch : https://goo.gl/forms/jnhl45rosttSLXUt1
Remember that these surveys have limited availability and time is of the essence, so thank you for your prompt feedback.
LUPUS EUROPE’s Board