In 1989, LUPUS EUROPE (then named ELEF)’s first convention took place in the historical city of Leuven. 29 years later, LUPUS EUROPE’s 2018 annual convention brought us back to the place of our beginnings. The 2018 convention theme was “Restoring Hope”. Lupus is not always easy to deal with and we can often feel down: when a flare is painfully reminding us of the disease; when one more clinical trial fails; when we feel tired and misunderstood… As leaders in patient groups, we also regularly receive calls for help from people who are so scared after just being diagnosed, or who face depression. It is so easy to lose hope when you have lupus…. Yet there are reasons to keep hope: the search for new medication is more active than ever; patients are becoming more involved handling their own disease; lupus awareness is growing; legislation in support of people with disabilities (visible or not) is progressing; and patient support groups are bringing hope to their members in many different ways.
A total of 37 member delegates, coming from Belgium (5), Cyprus (2), Denmark (3), Finland (2), France (3), Italy (4), Lithuania (2), Netherland (3), Portugal (2), Slovakia (1), Sweden (1), UK (7), Switzerland (1), and Israel (1) joined the convention this year, making it a record number of participants.
Our program gave a very large place to interactions between participants, with 15 different workshops on various topics centered on the “restoring hope” theme. Participants defined and selected themselves the themes that they had most interest for, including how patients can better participate to research, making the web more positive, Giving inspiring life stories, or enjoying the small things in life.
We obviously reviewed the activities of lupus Europe in 2018, and in our council session, renewed the board and set the direction for 2019. Several external speakers gave us additional insights on the theme of “restoring hope” : Professor Houssiau, chair of the European Lupus Society addressed the recent medical developments, and the reasons to hope they provide; Bernadette Van Leeuw, Chair of Lupus Belgium (French speaking group) highlighted the importance of action to make better things indeed happen as a key component of hope; Torben Wiese, inspirational speaker, invited us to all become change agents; and Nele Cayers (Chair of PARE) explained how we can achieve better results by leveraging the broader EULAR community. The convention closed with an excellent seminar from Sylvia Gauman (Swiss delegate)on improving our communication with Journalists…