Many thanks to those of you that have already completed the short survey on Research, which we have sent last week. Your input is critical to build plans that meet your needs. The survey will close in just 2 days and we are still missing many responses. We would therefore very much appreciate, if you have not yet done it, that you also provide us your input by answering a few questions at the below link:
This information. together with input from multiple stakeholders will help us prepare LUPUS EUROPE’s 2018-2023 strategic plan, particularly in the area of research.
As additional background:
Over the past 5 years, LUPUS EUROPE already took several steps in this area, including the appointment of a trustee in charge of research, investment in training Patient Research Partners, participation in multiple research programs, running of our own surveys and panels, active engagement in the EULAR task force on SLE, … These actions have delivered results, but so much more is needed.
To help the board make its strategic choices in this area, we have collected some input during our last convention and staged 3 different workshop sessions over the past weeks: one with Doctors and Scientists; one with other patient groups; and one with representatives of the pharmaceutical industry engaged in Lupus related research. We would like to complete this work (on which we will report soon to you all) with additional member input in the form of a survey.
So please, help the LUPUS EUROPE Board, and raise your voice by completing our short questionnaire (only 8 questions) no later than Saturday April 22 in the morning. The questionnaire is run on survey monkey at the following link:
PS – You are receiving this email because you are listed as International Contact, Chair or representative of a LUPUS EUROPE member. You can help us maintain our records accurate by checking that your data is up to date with the link provided in the footer of this message “update your information”. Thank you.
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