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RESEARCH WORKSHOP REPORT

As part of its work to define LUPUS EUROPE’s 2018-2023 strategic plan, the board decided to gather input from multiple stakeholders on where it should focus its effort in the particular area of Research. This is an area of particular importance as people with lupus need new treatments to improve their long-term prognoses and the quality of life. We need a better understanding of the disease and its medical, social and psychological impact, so that effective plans can be put in place to provide the necessary support. LUPUS EUROPE strongly believes that such research can only take place with the active participation of people with lupus, and of patient organisations.

Over the past 5 years, LUPUS EUROPE has already taken steps in this matter, 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.

The objective of the LUPUS EUROPE’s multi-leg Workshop was to understand how we can best (i) support clinical trials (so difficult in the area of lupus), medical research, sociological research and surveys that increase knowledge of living with lupus; (ii) bring the patients’ voice to Research and CTs, and (iii) define paths to improved quality of life for our people. To achieve this, LUPUS EUROPE staged 3 different workshop sessions: one with Doctors and Scientists engaged in research (including our medical panel, but also other lupus researchers); one with other patient groups and non-profit organisations that actively engage in this area; and one with representatives of the pharmaceutical industry engaged in Lupus related research. In addition, it gathered input from its members through a survey distributed to its member organisations chairs and International contacts.

THE FULL REPORT IS AVAILABLE IN PDF FORMAT HERE

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