|Dear LUPUS EUROPE Member or Friend,|
Please read the following below; your answers are important and urgently needed as the surveys will only be open for a few days. Our aim is to maximise the input of participants. Sharing this survey could be worth money to your organisation. Members effectively disseminating this information through their networks will earn discounts for the next convention.
LUPUS EUROPE is involved in driving forward multiple projects alongside Academics, Researchers and Doctors who are dedicated to helping people with lupus enjoy a better quality of life. We have received 2 requests for support to participate in an online survey with a very clear format. The objective is to collect information from the wider lupus community including patients, family and caregivers. This information is then analysed by a multi-functional team, in which LUPUS EUROPE is represented, to trigger action, influence projects and/or guide decisions.
If you have a systemic lupus (SLE), we would very much appreciate if you could complete BOTH surveys. If you can only do one, then please start with INTEGRATE.
The surveys have been translated into a few languages : 3 for INTEGRATE, 7 for the ERN. Unfortunately, we have not been able to get translations in all languages used in our community. We attempted to do so, but it proved impossible due to regulatory restrictions causing time and costs to become overly excessive. Please accept our apologies for this and use the language that you are most familiar with. We still hope to find solutions to these issues for future surveys.
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), 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.
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
Both surveys are TIME SENSITIVE and WILL ONLY BE AVAILABLE FOR A FEW DAYS. Please answer and distribute through all networks as soon as possible.
For LUPUS EUROPE member organisations; distributing these surveys via your networks will grant you 2 x 50 Euro discounts for the next convention. Please send a screenshot of your messages encouraging participation to the secretariat, and encourage people to answer as a high participation rate will be testimony of your effective support.
Remember that these surveys have limited availability and time is of the essence, so please act now.
LUPUS EUROPE’s Board