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Dear Lupus Europe Friends and Members,
Today, May 26th, Lupus Europe can celebrate its 30thanniversary! A lot has happened in those 30 years. In 1989 there were no biologics to treat lupus and a pharma company would never think to involve patient ‘experts’ in the research projects as equal partners. Not only do we now have the first biologic treatment directly approved for lupus, but many more are in the pipeline! At the same time researchers are increasingly asking to involve patients in the research and development of new treatments! Patients are no longer simply taking their medication but are taking control and responsibility of their own lives, which helps to give a higher quality of life and a more effective treatment.
Kirsten Lerström, Chair from 2012 to 2017, said “It has been a wonderful experience to be part of your growing up and development into the fine and vital organization of today.” Yvonne Norton, Chair from 2008 to 2012 said “the greatest joy has come from meeting many, many people who live day-by-day with lupus, who smile and put on a cheerful exterior (while silently screaming with the pain they are feeling) to help others cope with their lupus and know they are not alone”. Read what Yvonne, Kirsten, and Jeanette say about these 30 years here.
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LUPUS EUROPE’S ON LINE SURVEY
with European Reference Network ReCONNET
One of Lupus Europe’s objectives is to participate to a better understanding of living with lupus in Europe by collecting and analyzing feedback of people living with lupus across Europe. Together with the European Reference Network ReCONNET and our member NVLE, we have designed a short survey addressing few important current questions that should help us improve standards of care across Europe. If you have lupus yourself, your participation is important. It should take you no more than 5 minutes to respond and help us collect the information we need. The survey is available already in 13 languages here. If your local language is not available, join our translation volunteers team by simply sending an email
please participate NOW
spread the link • thank you!
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VOLUNTEER to support Lupus Europe
Join the VOLUNTEERS Groups!
LUPUS EUROPE’s ambitious program for 2019 will only be fully delivered if more people living with lupus volunteer to help us. We need your support to take part in one shot patient panels, translate documents, help us keep social media active,… You too have skills or experience that you can bring to the team. If you are ready to help us, whether on an ad hoc, per project or a more structural basis, let us know. Fill in this simple form here telling us the type of things you would be interested to do or skills that you could contribute, so that we can match you with opportunities when they arise. You will be joining a great and enthusiastic team! THANK YOU!
join the VOLUNTEERS Groups here
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UPCOMING EVENTS
save the date!
JUNE, 7-9 • Milan, Italy • IADPO Congress • here • IADPO stands for International Alliance of Dermatology Patient Organizations • here
JUNE, 10-14 • Barcelona, Spain • EURORDIS Summer School • here • EURORDIS stands for Rare Diseases Europe • here
JUNE, 12-15 • Madrid, Spain, EULAR Congress 2019 • here • EULAR stands for European League Against Rheumatism • here
JUNE, 17 • Online • LE Webinar #2 on Clinical Trials • join here • LE stands for Lupus Europe • here
JUNE, 28 • Brussels, Belgium • EPF Patient – Medtech Dialogue Workshop on ‘Patient Involvement in the Lifecycle of Medical Devices’ • apply until June, 2 here • EPF stands for Europe Patients Forum • here
SEPTEMBER, 5 • Online • LE Webinar #3 • LE stands for Lupus Europe • here
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EULAR CONGRESS 2019
Madrid, Spain, 12-15 June 2019
At this year’s EULAR Congress in Madrid, Spain, Lupus Europe is represented with no less than four Board of trustees. EULAR is a very big and busy Congress and we always have lots of work to do. Here we show the academic world and pharma companies what lupus Europe is all about, make new contacts and learn what is new in the lupus research area. We got two abstracts accepted this year and will be presenting the patient panel on YOUTH and the exercise program that we developed for lupus patients. The Congress takes place from June 12 to 15.
read more about the congress here
about EULAR • European League Against Rheumatism here
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LUPUS EUROPE CONVENTION 2019
Liverpool, United Kingdom, 23-25 November 2019
As announced in our first webcast, Lupus Europe’s next convention will take place November 23-25 in Liverpool (UK). The program is reaching finalization and promises an exciting program on the theme of ‘Education to Empower’. Several experiments on research in Europe highlight how better education is a critical component of better quality of Life living with lupus. Education is a lot more than just sharing information. Our convention will explore, through conferences with renowned experts, interactive workshops and brainstorming sessions, various ways we can help people living with lupus be more empowered to deal multiple aspects of the disease, from self-management to participation in research or raising awareness… As successfully done last year, the day before the convention will be dedicated to Patient Advisory Session and thematic workshops with researchers and industry. So, take your agenda, and already lock travel on Thursday November 21, return by Monday November 26 evening, and in between great speakers, discoveries, participation, fun and friendship!
More details to come soon • stay tuned for news
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what happened this last quarter
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INTEGRATE Project
Pisa, Italy, 1-3 March 2019
In the beginning of March, a group of Lupus Europe representatives met in Pisa, Italy for the INTEGRATE project. The INTEGRATE project was funded by the European Commission involving the University of Pisa (Italy), the University of Dusseldorf (Germany) and the Sant’ Anna School of Advanced Studies (Italy). The aim of the project is to map the needs and expectations of patients with SLE and the rheumatologists involved in their care and management in order to design strategies integrating both points of view, with the final goal to improve management and self-management of the disease. You can read more about the March meeting here. There was a follow-up on this project with more Lupus Europe representatives on the 15 thof May.
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LUPUS EUROPE WEBINAR #1
5 March 2019
As a new undertaking Lupus Europe held it´s very first, but certainly not last Webinar on March 5th. During this webinar we introduced our new trustees, Laura and Helga talked about a few of our ongoing and future projects and presented our new web page. The technological side worked fine and we had a lot of participants, who raised some good questions along the way. All in all, it was a success and we are at the moment planning our next webinar on Clinical Trials for June, 17.
join the #2 here • June, 17
and save the date for #3 • September, 5
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EULAR RECOMMENDATIONS
4 April 2019
European League Against Rheumatism (EULAR) published an update to a set of recommendations for the management of Systemic Lupus Erythematosus. The recommendations report on emerging new evidence and expert opinion made since the first EULAR Recommendations on Systemic Lupus Erythematosus were published in 2008.
read the press release here
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EULAR PARE 2019, The Highlights
Prague, Czech Republic, 5-7 April 2019
Lupus Europe trustee Laura Sinnett was our representative at the 22nd PARE Conference in Prague, Czech Republic with over 120 delegates. PARE ‘People with Arthritis and Rheumatism in Europe’ forms an integral role at EULAR ‘The European League Against Rheumatism’. The main focus of this year´s Conference was working with Rheumatic and Musculoskeletal Diseases (RMD’s), an important issue for many lupus patients. Besides attending workshops, Laura presented Lupus Europe´s new Patient Advisory Network and explained about all the work our organisation does. You can read about Laura´s experiences here. There will not be a PARE Conference next year, as the organisers have chosen to take a break and reorganise.
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EPF ANNUAL GENERAL MEETING
Brussels, Belgium, 13-14 April 2019
In the weekend of 13-14 April 2019, EPF Members gathered in Brussels and Lupus Europe was represented by Annemarie Sluijmers , for the AGM of EPF. One of the main topics was (after the common business for a AGM) the changing climat in the political area in Europe and especially in the EU. Due to this change in a Leadership meeting a start has been made to amend and adopt new strategic plans for the period 2020-2024 at the Annual General Meeting next year.
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WORLD LUPUS DAY 2019
10th May 2019
As you all know, May 10th was World Lupus Day (WLD)! The focus points for this year´s campaign was emotional support for lupus patients and the need for clinical trial volunteers. As the previous couple of years, Lupus Europe followed the World Lupus Federation (of which Lupus Europe is a co-initiator) led on WLD and you can find all relative information, which is still valid, as well as toolkits on their web page here.
spread the awareness! • use the toolkits
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LUPUS EUROPE WORKING GROUPS
Leuven, Belgium, May 18-19, 1st Face2Face Meeting,
We have had great success with gathering members for our new Lupus Europe working groups. Following our latest call for interest we have been able to add 9 new Patient Advisory Network members and 6 new members of the Communication Group. THE FIRST FACE TO FACE MEETING of both networks was held in Leuven, Belgium May 18 -19 and you will hear more about this exciting and energetic weekend at a later point. Thank you to all the participants – without you all the interesting things Lupus Europe is doing wouldn´t be possible!
join the VOLUNTEERS Groups here
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Contacts & Social Media • Follow Lupus Europe
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