Dear LUPUS EUROPE friend,
As we have just closed our “living with lupus in 2020” survey, we want to extend a huge THANK YOU to all those that have participated or contributed to the dissemination and promotion of this patient driven survey.
Thanks to you all, it has been a tremendous success. No less than 5922 entries have been received over the past 3 weeks. From the participants, 91.3% were women, 4.0% men, 4.7% preferred not to answer. 4586 had systemic lupus, 376 cutaneous, 31 drug induced lupus, 270 childhood onset, 274 a lupus-like disease, 62 had no lupus, 323 did not answer this question.
Participants came from all European countries, with high participation in almost all countries, allowing to paint a true European picture of today’s situation, as well as to run sub-analysis by country or group of countries.
With such a large set of data, multiple analysis will be possible, which will help direct the best action in the future. We are all eager to understand what the most bothersome symptoms of lupus are, how lupus affected our couple or family life, our studies or career… and what most helps us all, across Europe, to cope with lupus.
We want to do this in a professional way, so that your collective input can be relayed with all the credibility and the power it deserves. It will therefore take a bit of time to dissect the information, draw conclusions and gain endorsement of leading experts so that the findings can be disseminated in the most appropriate way. We will therefore ask for your patience before we can communicate the findings, but did not want to wait to thank you all for your support and input.
This survey has been a wonderful experience for the European lupus community. Results achieved in several Eastern European countries, as well as the links we have established while running the survey give us good hopes that we will soon have new member organisations join our group, making us, all together, stronger than ever!