all the latest news
from LUPUS EUROPE November 2023
Dear Members and Friends,
As the days grow shorter and the winter chill sets in, we at Lupus Europe are gearing up to bring you the latest updates that have been unfolding in our community.
Mark your calendars for our much-anticipated webinar on CAR T cell therapy scheduled for Tuesday, December 5th at 19:00 CET. With the guidance of Professor Ed Vital, we aim to explore the intricacies of this new therapy. Registration details are just a click away!
Did you know that Lupus Europe has a free exercise programme for lupus patients? Tailored by skilled physical therapists, working together with people with lupus, this exercise programme is flexible, accommodating the unique challenges faced by so many of us. Dive into the programme to discover which exercises best fit you.
Ever wondered about the faces and stories behind Lupus Europe’s decisions? Don’t miss out on the account of Chryso Yasoumi, the newest Co-Opt Advisor to the Lupus Europe Board, as she delves into her enriching journey with us.
For dedicated volunteers of lupus organisations across Europe, we have crafted a very brief survey to capture your invaluable insights. Your views are not only crucial for us but also for our member organisations. Through your insights, we can better understand how to inspire and motivate volunteers to actively participate in national lupus groups, ensuring our combined efforts align closely with the needs of our broader community.
Reflecting on the past quarter, the Industry Roundtable in Leuven stands out as a testament to our commitment to progress and collaboration. Furthermore, our Board Meeting in Leuven was a whirlwind of planning, strategising, and working together for all people with lupus across Europe.
Parallel to our Board Meeting, the Youth Group of Lupus Europe held their vibrant and insightful meet in Leuven, charting out a roadmap for youth-centric activities in 2024. A fusion of creativity, hard work, and collaboration, the meet up has set the stage for exciting ventures in the coming year.
Wishing you a warm and serene winter season!
On behalf of the Board of Directors, Annemarie Sluijmers
Vice Chair of Lupus Europe
What do the acronyms mean:
CAR- T Cell Therapy: Chimeric Antigen Receptor T-Cell Therapy PAN: Patient Advisory Network
PRPs: Patient Research Partners
What is coming!
Lupus Europe Webinar CAR-T Therapy
Delve into the intricacies of CAR T cell therapy at our upcoming webinar! Join us on Tuesday, December 5th at 19:00 CET as we explore the potential uses and implications, both promising and challenging, of CAR T cell therapy in lupus, with esteemed speaker, Professor Ed Vital. .
Did you know about the Lupus Europe’s free Exercise Programme? Developed in partnership with trained physical therapists, this tailored five-level exercise plan is designed for lupus patients.
Recognising the challenges of beginning exercise when battling lupus fatigue, this programme offers flexibility, allowing you to choose a level that feels right for you each day. You won’t need any special equipment, and each routine takes just 15-20 minutes. The programme has received endorsement from several leading European lupologists and is also endorsed by ERN ReCONNET and recommended by EULAR. Discover more and find a routine that suits you: https://www.lupus-europe.org/me-lupus/
Get to Know a Lupus Europe Board Member
Watch as Chryso Yasoumi shares her enriching journey as a Co-Opt Advisor to the Board of Lupus Europe, detailing her involvement in key decisions, collaborations, and the invaluable learning experiences. An insightful look into the heart of Lupus Europe’s operations!
What is happening:
Calling all Lupus Organisation Volunteers – Short Survey
Are a volunteer for a lupus organisation? Are you passionate about making a difference? Share your insights through this short 3-4 minute survey and help us and our national member groups enhance engagement and better inspire volunteers like you. Take the Survey Now!
Spread the word by sharing this link within your networks too.
Happened last quarter:
On October 20th, LUPUS EUROPE hosted an Industry Roundtable in Leuven, Belgium, bringing together our Industry Partners to talk about the work of Lupus Europe.
Jeanette opened the roundtable by outlining the objectives of the day and setting a clear tone for the productive discussions that followed. She was followed by Amy, who gave insights into our accomplishments in 2023, aligned with strategy 1 of our 2023-2028 strategic plan, which is all about “People with Lupus Participate in, and Benefit from, Lupus Research.”
Aldevina stepped up next, showcasing the achievements relating to strategy 2, focusing on National Member Groups and on how we are working towards the goal of our “member organisations are enthusiastic and empowered.” The conversation was further enriched by Ida and Elfriede, who jointly highlighted the progress made on strategy 3, which pertains to “Being Heard and Active.” Annemarie then eloquently presented the strides made in strategy 4, centred on “sustainability.” Zoe shared preliminary thoughts for 2024 for all four strategies.
Zoe then led a session on diversity addressing the pressing need for better representation and outreach to ethnically and economically diverse lupus patients in Europe. This was succeeded by a dynamic workshop conducted by Alain on our upcoming Swiss Knife Survey. Jeanette led an interactive discussion on the Lupus Europe Clinical Trial Info Centre and our future plans for this resource. This was followed by an engaging workshop on the enhancement of the roles of Patient Research Partners (PRPs) and Lupus Europe Patient Advisory Network (PAN) members. There was also time for some exercise!
The day was concluded by Jeanette, reflecting on the myriad of discussions and plans that had been touched upon.
A thoroughly engaging and constructive Industry Roundtable for 2023!
The Board and extended Board of Lupus Europe met from October 21st to 22nd, 2023 in Leuven for two very interesting and productive days of work!
We had a strict agenda, guided by our Strategic Plan for 2023-2028. We discussed the Lupus Europe Convention 2024 (more news on that to come soon), reviewed our Strategic Plan for 2023-2028 and discussed concretely our goals, strategic objectives, and priorities for 2024.
We reviewed exciting new projects that are in the pipeline, talked about next steps for the Lupus100 project, had extensive discussions on enhancing and growing our Lupus Europe volunteer programme including our translators’ network, and organised upcoming meetings and trainings for the year.
It was a weekend full of productive meetings with important decisions on doing even more for people with lupus across Europe!
Do contact any of the board members if you’re interested in applying to become a Board member or, perhaps to start with, a Co-Opt to the Board.
Lupus Europe Youth Group Meet Up
From the 20th to the 22nd of October 2023, alongside the Lupus Europe Board Meeting, the Youth Group of LUPUS EUROPE convened for a parallel, inspiring gathering.
Ten young people from across Europe came together in Leuven, Belgium to exchange their personal journeys with lupus and strategise youth-centric activities for 2024.
With an amalgamation of lively games, a lot of hard work, and interactive discussions, the meeting turned out to be a great blend of fun and productivity.
A highlight was a workshop on social media conducted by Nuria Zuniga, who runs LUPUS EUROPE’s social media channels. The session opened up a realm of digital possibilities, emphasising the importance of working together to find ways to engage young people where they are most active.
A central theme of the meet was exploring possible avenues of collaboration between the Youth Group and broader LUPUS EUROPE projects. On Sunday, October 22nd, the Youth Group and the LUPUS EUROPE Board came together for a collaborative session. During this gathering, the young members presented their plans for 2024, sparking dynamic discussions and receiving constructive feedback from the Board. A unanimous highlight was the ambitious goal of hosting a special Youth Group event for World Lupus Day in 2024.
Guiding the young people through this journey was Alain, who ensured that while the group had autonomy in running their meetings, any support or guidance they may have needed was at hand.
Welcome to Lupus Europe. To join our pan-European community, please contact us.
LUPUS EUROPEUniting people with Lupus throughout Europe
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