Dear LUPUS EUROPE Members and Friends,
Another few months of intense activity for LUPUS EUROPE have lapsed since our last Newsletter: The key highlights have been the Strategic Workshop we held early June to define next 5 years priorities, and of course the unmissable EULAR conference, but also a number of less visible engagements to modernise our web presence and image (more to come soon on this), prepare the Milan convention and a youth panel, or linking with our partners and sponsors to close the current year’s funding.
Stay tuned to what happens by signing up for regular news on the LUPUS EUROPE Blog (http://lupus-europe-blog.org/) where Jeanette and Katharine are posting regular updates.
LUPUS EUROPE CONVENTION 2017 – REGISTER NOW
The theme for this year’s convention will be “Pain, Fatigue and Stress”. Thanks to Augusta and Daniela’s dedication, we have already lined up a great programme which will combine valuable speakers, interactive workshops and sharing sessions. This will also be the occasion to finalise our 2018-2023 Strategic Plan together, making sure all our energy is focused on what matters most to achieve our vision of “A fulfilling life for all people living with lupus, until we have reached a world without lupus”. Registrations are almost closed, and we are delighted to see record attendance of our members. If you have not registered yet, get your diary out NOW, note down November 15-19, 2017, LUPUS EUROPE Convention, Da Vinci Hotel, Milano, Italy and send an E-mail directly to the secretariat (firstname.lastname@example.org) , to get all details and registration forms. If you are not a member of LUPUS EUROPE, please note that the Sunday will be dedicated to the Council session, which is members only.
The convention details and programme can be downloaded at this link
APPLY FOR TRUSTEE POSITIONS
LUPUS EUROPE is alive and kicking thanks to the dedication of its Trustees, Co-opt advisors and supporting volunteers. Trustees are elected at the convention, and you still can apply. If you want to become a LUPUS EUROPE Trustee, please send your application to the secretary, including a supporting statement from one of LUPUS EUROPE’s full members. More details can be obtained from our Secretary, Jeanette Andersen . Read Sara’s story in this newsflash, or testimonies from Katharine and Kirsi on our blog, and don’t hesitate, join us!
THANK YOU TO LUPUS UK & ITS MARATHON RUNNERS
Thanks to the great support of LUPUS UK, we had another successful participation in the London Marathon, with no less than £4,290 raised for Lupus Europe by 5 courageous runners. Our thanks go to Lisa, Leanne, Sean, Chris and Carolyn for 26.219 Miles (that is 42.195km on the continent) of effort in raising Lupus awareness, as well as to Janine and the LUPUS UK team for the organization and ongoing support!
PEER REVIEWED PUBLICATION OF PATIENT PANEL II FINDINGS
Thanks to Davide Mazzoni’s (LUPUS EUROPE Co-Opt on Research) great work, the findings of our patient panel II are now published in the peer reviewed Musculoskeletal Care revue. You can find Davide’s article under the name “Living with Systemic Lupus Erythematosus: a patient engagement perspective” using the following linkhttp://onlinelibrary.wiley.com/journal/10.1002/(ISSN)1557-0681
Patient engagement is a crucial component of quality healthcare services, and is particularly challenging for people with lupus. According to the patient health engagement (PHE) model, patient engagement is a dynamic phenomenon that progresses through four stages (blackout, arousal, adhesion and eudaimonic project). In his review, Davide shows how this model applies to SLE patients. Ten in‐depth interviews and four focus groups were conducted with an international sample of European SLE patients. Davide analysed the transcripts through thematic content analysis. His findings show that a fully engaged patient results from reframing emotional, cognitive and behavioural dimensions. The advances throughout the process depend on how the patient succeeds in each phase. A critical finding from the report is that to meet patients’ needs, healthcare providers and patient support groups should provide adequate and tailored support based on the specific phase each SLE patient is at in his/her journey with lupus.
LUPUS EUROPE’s 2016 ACCOUNTS are approved and available on line.
Every Year, LUPUS EUROPE’s accounts undergo scrutiny from external auditors, as a matter of good governance. After their clearance is obtained, the accounts are published on the Charities Commission’s website, where they are available for anyone to see.
Our 2016 financials show an income of £62,247 before cost of generating funds of £2,051. Expenses amount to £58,098. The annual convention (and the related activities & projects) remains our biggest expense at 23k£, followed by secretariat (12k£), projects (10k£), board and workshops (7k£). The net 2k£ gain from the year’s on-going operations was substantially increased by a huge exchange gain of £15,872 due to the massive shift in £/€ exchange rate. As our accounts are mostly held in Euros, the currency in which most of our income and expenses are incurred, this gain is, however, mostly of a reporting nature, rather than a new source of funds.
Sara was elected to LUPUS EUROPE’s Board of trustees last October. Here is how she describes her first 8 months as a LUPUS EUROPE trustee:
After an induction with the various trustees and learning more about LUPUS EUROPE in general, my first big conference was the EULAR PARE Youth conference: Amazing, so big, so glamorous and yet so relaxed and such a friendly environment. It was really the best conference to start with! I learned so much from other patients living with Rheumatic diseases in Europe and the workshops there were so inspiring and engaging. I made some new friends and got thrown straight into networking and learn how to do that in the best way. After the PARE Youth conference I felt like I had gotten some “meat on my bones” and felt ready for my next challenge, which was a Lupus Think Tank in Washington D.C. It was a very intense meeting: just one day where me from Lupus Europe, LFA, Lupus Research Alliance, Lupus and Allied Diseases Association together with a pharmaceutical company and ACR brainstormed to bring different ways of approaching awareness about Lupus and what to focus on regarding treatment for patients.
I then joined the Lupus Academy, a program for Rheumatologist specialized in Lupus where they can ask questions, present difficult cases and get advice from experienced professors. It was very interesting to hear the doctors’ point of view, and feel how much they care about their patients and very humbling to hear their worries when major flares happen and everything is on their shoulders to try to save their patient. If you think that the doctors don’t care about you and only want to keep you on medications and move to the next appointment without even listening, I can tell you that that is not the case!
My next stop was at the EULAR course for young rheumatologists. This was my first official presentation for LUPUS EROPE in front of educated doctors. I was so nervous… But it went really well. I presented our patient panel outcomes, how patients with Lupus live with the disease in Europe. It was a really fun group of young doctors, I made some new friends and I hope to go back next time.
After that experience, I got selected to take part in the ReConnet steering committee. reConnet is a network for collaboration between scientists, doctors and health care professionals working on connective tissue diseases, to unify how to diagnose and treat those diseases, and to bring the same standards of care regardless of what country in Europe you are in. It is part of the European Network project (ERN), a a five-year project funded by the European Commission.
My last big event before vacation was the annual EULAR congress. It was big, flashy, extravagant and way way way too much lecture to go to, meetings to attend and networking to do. While the lectures I attended were very interesting, the networking was even better. Everyone and anyone who has anything related to rheumatic diseases were at the congress, the best place for networking and spreading the awareness about Lupus.
After EULAR, it was time for some vacation: Travelling is more exhausting than you would think! And being a trustee also involved board meetings, a round table with pharmaceuticals, medical doctors and other patient organizations,… The journey has really been an intensive crash course (that lasted a bit longer than just a crash course) in how everything works. So with that, I was well equipped to contribute to designing our next 5 years strategic plan.
I am very excited to be a part of Lupus Europe during this time when we are shaping how the next 5 years are going to be like! If you want to make a difference and really feel the difference you can make in this world, if you are interested in making a difference for people living with Lupus, take up some of these volunteering positions, apply to our board or to be one of our co-opts to leave your mark in this world, knowing that you’re making a difference. I promise, you will Not regret it!
HELP ACCESS TO HEALTH CARE FOR ALL
LUPUS EUROPE is proud to be an active member of EPF, the European patient Forum. In early 2017 EPF launched a campaign on access to healthcare for all to raise awareness about the barriers that patients face in accessing healthcare, and to build on political momentum to foster more EU cooperation on access to healthcare.
Every patient in Europe should have access to affordable, appropriate, accessible, available and adequate health care and social services. This is still not the case today. To voice our collective engagement, EPF has launched an online petition to gather as many signatures as possible calling on EU Institutions and Member States to overturn the current trends of short sighted decisions on investment in healthcare, and to make a real commitment to realising the UN Sustainable Development Goal target of universal health coverage for all by 2030.
As citizens and patients of Europe, we all have good reasons to support this campaign, so please show your support by adding your voice, it just takes one click. Sign EPF’s online petition now! The more signatures we gather, the louder our claim will be, so please spread the word and share the link with your members, networks and friends.
EULAR is ‘the’ place to be for latest scientific information on lupus and other Rheumatic diseases. As is the case every year, many of LUPUS EUROPE’s members, and some of our trustees attended the event, to raise the patient voice, hear about the latest developments, attend the PARE meeting, and network with scientists, researchers and other patient organisation delegates.
Here are few take-aways that LUPUS patient attendees reported:
While pregnancy is still a challenge, it is in most cases no longer a problem. Even knowledge about the use of biological drugs during pregnancy is improving, opening up new treatment options during this period in the future.
Family planning counselling, from diagnosis and ongoing by both rheumatologists and gynecologists has proven very important in improving the outcome in pregnancy.
While the importance of psychological support for Lupus patients is recognised, resources are lacking. An open question is who should take care of this aspect. Fatigue, pain, negative thoughts and guilt are the main challenges to deal with. Keeping a diary was mentioned as improving the managing of the day and the doctor-patient relationship.
The higher risk of Cardio-Vascular diseases in SLE has been demonstrated, highlighting that ASA and HCQ>600mg (and statins when LDL > 100) can help in reducing the risks.
Belimumab has been used for more than 10 years with positive results.
Patients can participate in all the phases of a project from conception to realization and dissemination. An example of a self-assessment site for Sclerodermia in the USA was presented where Patient Research Partners participated in all the phases.
The importance of patient reported outcome in evaluating the status of SLE and disease activity continues to be debated: Several presentations highlighted its importance but some contrary voices were also heard during the conference.
Several presenters, including Martin Aringer, one of our lead 2016 Convention speakers highlighted the challenges of existing criterion for Remission definition in SLE, Sjögrens and APS. Defining technical measurement remains an important debate.
Matthias Schneider and other presenters raised the questions of which target/outcome is more relevant in the management of SLE. This is an important debate in which patient organisations will need to continue raising their voice.
Dr Christodoulou presented on the positive impacts of positive thinking and mindfulness on chronic illness.
Plaquenil is once again shown to protect patients from mortality and other diseases… Adhere to your treatment.
Inflammation seems to change throughout the day: Tissue damage is the highest in the morning and reduces through the afternoon but then goes up again in the evening, to peak again early in the morning.
Hydroxycloroquin reduces mortality by 45% (adhere to treatment!). The SLE subgroups with the highest mortality risk are patients with Dementia, Epilepsy, Renal failure, Diabetes and Malignancies.
Welcome to Lupus Europe. To join our pan-European community, please contact us.
LUPUS EUROPEUniting people with Lupus throughout Europe
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