As part of our November 2017 convention, we have defined clear objectives for the year, which are now progressing very well: 7 Patients will raise the voice of people with lupus during the EUROPEAN LUPUS MEETINGS end March, Our PATIENT PANEL ON YOUTH is scheduled for May 18th-20th (we only have 2 slots left… hurry). We actively engaged with the ERN ReCONNET, and thanks to our members help, people with lupus were the most responsive disease area in the January ERN survey. Our new WEBSITE is almost ready. We are making solid progress in establishing a PATIENT EXPERT GROUP and are focusing now on selecting the final candidates from over 20 applicants as well as finalising the training and induction progress to bring everyone on board. Finally, our new WORKING GROUPS on Communication, Message tracks and kick Lupus have all generated substantially more interest than expected! So yes, indeed, we are off to a great start this year!
COME AND SEE US AT
From March 21st-24th, 2018, the 11th European Lupus meeting will be held in Dusseldorf. This year no less than 11 sessions will bring the patient’s voice to the table thanks to LUPUS EUROPE delegates. Many thanks to our lupus colleagues who accepted the challenge of representing our community in the following sessions: Wendy Zacouris ‘All lupus patients should be on antimalarials!’, Zgjim Osmani ‘Treatment of lupus nephritis without glucocorticoids?’, Sara Badreh ‘Minimal clinical data set for routine care/research?’ and ‘B cell depleting treatment in lupus’, Kirsten Lerstrom ‘Improving trial design and How to improve lupus outcome?’, Jeanette Andersen ‘Patient empowerment!’ and ‘Measuring lupus disease activity in daily clinical practice’, Yvonne Norton ‘Who takes care of lupus patients?’ and Bernadette van Leeuw ‘Fatigue in Lupus: feature of the disease or conditioning by patient “education”?’
Also, don’t miss the Friday March 23rd Plenum session on Patient Reported Outcomes that will be co-Chaired by Jeanette Andersen (LUPUS EUROPE Chair).
You are 28 years old or less, and live with lupus…
We have a once in a lifetime opportunity for you to join a 2-day workshop where, together with other young people living across Europe, you will be able to share your experience of living with lupus as a young person today. The 2 days will be built around interactive sessions, designed to share views, concerns, aspirations, requests, dreams … and will be led by people who have lupus themselves. All costs are covered… Interested? contact with our email@example.com without delay.
Applications close on February 28th!
JOIN LUPUS EUROPE’s
PATIENT EXPERT GROUP
You have lupus, and already have significant experience and understanding of the disease mechanism, you are ready to invest time in being trained as a Patient supporting research. You would like to bring the patients’ voice to the design, interpretation and on-going operation of research with industry, academics or other patient groups… Apply to join the PATIENT EXPERT GROUP. For more information, contact without delay our firstname.lastname@example.org
A note to (potential) sponsors
Like all organisations, our capacity to act is largely controlled by the funding we can collect, and the visibility of such funding. If you want to support LUPUS EUROPE, please contact Anne Charlet (email@example.com), Vice-Chair in charge of fundraising, so that we can identify together what win-win looks like.
WORLD LUPUS DAY CAMPAIGN
Last year, Inês Ribeiro from Portugal took the lead in organising a beautiful campaign which many of our members translated and replicated during the entire month of May. This initiative was a great success, and will be replicated again this year. To ensure its success, we are now seeking your support to identify 30 facts about lupus, so that we replace most of last year’s by new statements which bring knowledge, support and hope to the cause of people with lupus. Please send your proposed simple facts to Inês (firstname.lastname@example.org) by March 20th at the latest. Ines will then be able to distribute English language materials by April 15th for your use during the month of May.
IMPORTANT – FOR LUPUS EUROPE MEMBERS!
As we agreed in Milan, the participation fee for our next convention will discriminate in favour of those who have actively responded to LUPUS EUROPE requests and initiatives during the year. A letter has been sent to all our members clarifying the details. If you have not received this important news or have questions on its execution, please contact the secretariat at email@example.com without delay.
From LUPUS EUROPE’s Board meeting
Lupus Europe’s board met face-to-face in January. This allowed us to work on various projects identified in this newsflash such as our engagement with SLEuro, the active participation in the European Lupus Meeting, and the launch of specific workgroups. We also reviewed the status of our financing, discussed a proposal to engage in the design of a CME program focused on Lupus patient aspects, progressed on the creation of a Patient Expert Group, and started planning of our November Convention.
We also reviewed our program for the year ahead with a view to focus on LUPUS and EUROPE. You will find LUPUS EUROPE delegates in the following events:
February 15th-18th, EULAR PARE in Brussels
February 26th till March 1st, EUPATI F2F training
March 20th, The perfect Clinical trial workshop in Dusseldroif
March 21st-24th, European Lupus Meeting in Dusseldorf
April 14th-15th, EPF Annual General Meeting in Brussels
April 23rd-24th, DORIS Network Meeting in Amsterdam.
LUPUS EUROPE represents people with lupus in Europe in ERN ReCONNET
In early February, the European Reference Network on Rare and Complex Connective Tissue Diseases met in Pisa for 3 days of collaboration. Under Marta Mosca’s lead, some 60 delegates finalised the outcomes of the ERN’s first year of activities, and worked together on the action plan for the 2nd year, where many projects will operate in parallel. Over the next 12 months, the role of patients will be critical, in co-working many workstreams with professors and researchers specialised in the field.
The ERN’s objective is that patients with rare and complex conditions will benefit from the best treatment and advice available in the EU, by creating a pool of specialised health care professionals from all over Europe. They will share knowledge and help each other in complex situations through web collaboration. Thanks to this, it will be the information that will travel, rather than patients, facilitating access to diagnosis, treatment and high-quality healthcare. Educational programmes for patients and families, Improved therapeutic protocols, new guidelines and quality measures, and greater patient involvement are also priorities.
Doctor Fara Tamirou, the brilliant young doctor leading the Lupus workstream under guidance of Professor Nathalie Costedoat, shared the results of her analysis. She identified 2,096 publications with regards to lupus that were screened by the 18 participating Centers. From these, they could extract 16 Clinical practice guidelines that could form the base for explicit recommendations on best management of lupus. This work also allowed the identification of several areas of unmet needs, where no clinical guidelines have been formulated yet, despite the significant needs of patients and practitioners. As a next step, a publication of identified guidelines will be organised, validation and dissemination of best practices will start, while existing and new data will be reviewed to seek adoption of new ERN recommendations.
The ERN work is very patient inclusive. Within ReCONNET, we identified 20 patient support roles of which about 1/3rd would be people living with lupus. The work will involve collecting information, bringing ideas, reviewing workpapers, working with doctors to share patient views, … in areas such as the dissemination of Clinical Guidelines, creating lay versions, patient’s education, Research on unmet needs.
The one finding that struck me the most in the meeting was the result of 2 surveys, one among the participating doctors, which highlighted the main difficulties they face in the implementation of existing guidelines (1) procedure/drug reimbursement (57%!), (2) time limit (48%) and (3) legislative environment (34%)! A survey (still in process at the time of the meeting) identified that 90% of patients and families would like Lifestyle guidelines on matters such as food, exercise, work or pregnancy, …
Over the next year, there will be much involvement needed by the patient community to deliver the ERN objectives. Together with the doctors and health care professionals, we can make a lasting and very significant difference, but that will require everybody’s support. So please, whenever you see a request from the ERN, give it your prompt attention, and offer your best support.
LUPUS EUROPE BECOMES FIRST ASSOCIATE MEMBER OF SLEuro
We are proud and honoured that LUPUS EUROPE has become the first Associate member of SLEuro, the European Lupus Society.
SLEuro is a voluntary association that promotes scientific research and information with regard to SLE and related syndromes. The Society is building a community of clinicians and researchers interested in SLE at an international level, promoting research and education on SLE as well as equal access to the best standards of care for SLE patients across Europe, and facilitating research projects and clinical trials in SLE.
LUPUS EUROPE is a strong supporter of SLEuro whose goals are fully aligned with LUPUS EUROPE’s vision of “A fulfilling life for all people with lupus in Europe until we have reached a world without lupus”. Over a number of years, we have appreciated the relentless efforts of the academics and researchers at the origin of SLEuro. We cannot thank them enough for their dedication to Lupus Research, the building-up of a dialogue with lupus patient groups, and their every day care for all people living with lupus in Europe. To all lupus doctors, we say a big THANK YOU, from the depth of our hearts.
Welcome to Lupus Europe. To join our pan-European community, please contact us.
LUPUS EUROPEUniting people with Lupus throughout Europe
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