LUPUS EUROPE needs you!


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LUPUS EUROPE is the organisation that brings 26 national lupus groups from all over Europe together.  To better include all countries in its activities and work, it is opening up a number of interesting volunteering opportunities for members of our national groups.

There is no need to be a Lupus Expert, all that is required is the desire to contribute, and a fair (not perfect!) command of English, as well as a good internet connection 😊

Participating in a work group is great fun, and serves a real need. It will typically mean about 6 “skype calls” per year, and some work at your pace in between. We are seeking a 2-year commitment to allow for some continuity. If your workgroup requires one-shot travel within Europe, it will be fully funded. Active participation in workgroups might open up the opportunity for more travel, meetings and discoveries…

So why don’t YOU apply?

We are seeking:

3 to 4 Members for the Communication Work Group to improve overall communication – making it smoother and more regular – increasing our social media presence and LUPUS EUROPE’s visibility. The deliverables include creation and ideas but also ongoing support, which can be shared but requires consistent and planned messages showing LUPUS EUROPE’s work. Platforms include FB, twitter, the blog, youtube…  There is also an opportunity to beef up our media presence for events such as World Lupus Day and at busier times such as around the convention. You like communication and have design or communication skills? Apply to join the COMMUNICATIONS Group.

3 to 4 members for the “Kick Lupus” Work Group to bring the Kick Lupus concept alive throughout the year by developing and rolling out initiatives that make people move, fight, kick, share and take the lead to push lupus further away. You want to help people with lupus feel better and more energised, and have creative ideas and the energy to implement them? Apply to join the KICK LUPUS Group.

3 to 4 members for the “Message tracks” Work Group to develop clear communication objectives and messages that will be offered for re-use by our members. What is our message to doctors? To newly diagnosed patients? To the general public? To politicians? Working together and using the methodology presented at the end of the Milan convention, we will seek to develop message tracks, and toolkits to make deployment easier. You have ideas on what our communication priorities should be and knowledge about lupus to bring arguments to support them? You would like to put thoughts in a structured and impactful format? Apply to join the “MESSAGE TRACKS” group.

5 to 7 members for the Patient Expert Group: This call is for people living with lupus that have already significant experience and understanding of the disease mechanism, who have been (or are ready to invest in being) trained as EULAR PRP, EUPATI, Eurordis or other similar training for patients supporting research. If you are interested in contributing through closer connections with the Research community, bringing the patients voice to the design, interpretation and on-going operation of research by industry academics, apply to join the PATIENT EXPERT GROUP.

Up to 10 YOUNG people with lupus for a one-shot YOUTH PANEL, to be held in May 2018. If you are aged between 18 to 28, this is a great opportunity to meet other people that live with lupus around Europe, while raising your voice so that we better understand what it really means to live with lupus as a young person today. The 2 days will be built around interactive sessions, designed to share views, concerns, aspirations, requests… It will be led by people who have lupus themselves. Interested? Apply for the YOUTH PANEL!

1 person with skills in video editing that could support our desire to be more active in this space, turning raw footage of short testimonies into attractive videos for web usage.

APPLY NOW by sending a message to specifying which work group(s) you would like to join (giving a first and second choice), your name, address and phone number, a brief background on you and a few words explaining why you are interested. Applications will close by FEBRUARY 28 latest (earlier if great candidates are identified for all open positions).

LUPUS EUROPE becomes first associate member of SLEuro

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We are very proud to announce that LUPUS EUROPE has just become the first Associate member of SLEuro, the European Lupus Society.

SLEuro is a voluntary and non-political association with social and philanthropic purposes that promotes scientific research and information with regard to SLE and related syndromes. Its members are individuals and institutions of any nationality who share its goals. Members must work in the scientific sector, have proven education and training, and practise a professional activity as researchers, clinicians, nurses or healthcare professionals.

The Society is building a community of clinicians and researchers interested in SLE at an international level, with special focus on engaging younger physicians in the field, promoting and coordinating the organisation of research and educational meetings on SLE and related syndromes, promoting 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.
We are proud and honoured to be Associate Members of SLEuro, a connection which symbolises and strengthens the partnership between self-help organisations for lupus patients in Europe and the Medical Community fighting against lupus.


ERN survey on awareness and knowledge of clinical practice guidelines


An ERN (European Reference Network) ReCONNET Survey on awareness and knowledge of Clinical Practice Guidelines in rare and complex connective tissue disorders will be open until 10th February 2018.

These surveys provide vital information to the doctors and researchers setting guidelines for our care.

This survey can be filled in by patients or their families or caregivers. It applies to people with lupus but also those with rare or complex connective tissue disorders.

For more information about the ERN and the survey, please click here.


EPF Roadmap for Universal Health Coverage for all

On December 6th Katharine Wheeler participated in the closing conference for EPF’s campaign on Access to Healthcare for All. At the conference EPF presented their Roadmap for Universal Health Coverage for all. Katharine was invited to speak as a patient organisation representative and stressed the importance of leaving no-one behind if we want to achieve the UN sustainable development goals by 2030. She also stressed how important it is that all stakeholders, including patients, are involved across the board and that involvement is not limited to token gestures when it comes to designing new policies and looking at ways to reduce waste while improving the standard of care. This is all the more true when it comes to complex, chronic and rare diseases where care can be fragmented at best in any country, or almost non-existent in others.

Below you will find EPF’s press release, issued on 6th December.


BRUSSELS, 6 December 2017 – EPF’s Campaign on Access to Healthcare for All calling for Universal Health Coverage by 2030 is coming to an end. During its closing Conference held today at the European Parliament, EPF presented its Roadmap and called for political change to ensure the rights of all patients are respected, to fight the health inequalities that persist across the EU, and to make health a priority in all policies at national and EU levels.

A tool for political guidance and a call for a long-term vision

Patients and citizens still face many unmet needs and unequal access to healthcare in all EU Member States. The output of EPF’s one-year campaign, EPF’s Roadmap to achieving universal health coverage for all by 2030 aims to tackle these in two main ways: “With this Roadmap we want to provide political guidance and recommendations to policy makers and politicians and to encourage them to have a longer-term vision and to reflect on what kind of society we want for the patient community and the wider public by 2030.” said Nicola Bedlington, EPF Secretary General.

What is EPF advocating for?

This Roadmap is intended mainly for EU and Member State decision and policy-makers and urges them to:

  • Provide equitable access to high-quality care to all patients, regardless of which country the live in or their country of origin;
  • Commit to invest sustainably in healthcare based on outcomes and added value;
  • Ensure the delivery of healthcare products and services that are affordable for all;
  • Promote better coordination of care and implement access to a holistic range of health and related services, ensuring that the package of services covered by the healthcare system is tailored to the needs of patients;
  • End the discrimination and stigma that patients face and make sure that no population is excluded.

UN SDGs as a compass, European health collaboration as a means

The Roadmap emphasises the importance and need to establish a transparent, inclusive and collaborative working process for the implementation of UHC and the UN SDGs.

“I we don’t get it right on the SDG on Health, then there is a risk that the other SDGs will fail. By the same token, if we don’t get it right in health collaboration post 2020, then some other big aspirations for the EU in terms of economics and growth will also fail,” added Nicola Bedlington.

This Roadmap echoes numerous initiatives taken by EPF to increase access for patients and citizens across Europe. On Monday 4th December, the EPF roundtable on cross-border healthcare provided an updated assessment of the current state of implementation of the directive from the perspective of patients, pointing out the gaps in access but also in the quality and safety of the care received across Europe.

Please find here EPF’s Roadmap entitled ‘Taking Action – A Roadmap to Achieving Universal Health Coverage for All by 2030’.

A factsheet giving a snapshot of this Roadmap has also been developed.



Convention summary

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The LUPUS EUROPE annual convention has just come to a close. Hosted in Milan by Lupus Italy on the occasion of their 30thanniversary, the convention was an inspiring event centred around the theme of “pain, fatigue and stress”, with Dr Chiara Tani as a key note speaker.

Benefitting from the Italian Lupus Clinic experience, we also covered other topics such as the treatment of women who wish to have children, the use of biologics, how specialised lupus Clinics operate, … Among those presenting, and working in one such clinic, was Fulvia Ceccarelli, a rheumatologist who is herself a lupus patient. It was certainly interesting to hear from someone who has experienced both sides of the doctor/patient relationship. We also took a closer look at the non-biological side of pain, fatigue and stress, with an excellent presentation by the president of the Belgian French Speaking association, Bernadette Van Leeuw. Davide Mazzoni, one of LUPUS EUROPE’s patient research partners, presented a new study which is looking at the possible effects of childhood trauma and the pathways into adulthood which can affect a person’s disease onset and progress. He then took us through the 2017 survey “AT HOME OR IN HOSPITAL?” on the preference for subcutaneous injection or intravenous infusion of biological therapy among Italian SLE patients.

Our Kick Lupus campaign had a wonderful boost with Jeanette Andersen taking us through the new exercise programme (soon to be released). Jeanette has herself made an incredible recovery from being unable to walk last year to jumping and running around this year following her back surgery. The programme has several levels and can be started even if unable to get out of bed.

The convention was also the opportunity to discuss the 2018-2023 strategic plan with our members. The plan, developed after extensive consultation with multiple stakeholders provides us with a clear path for the years ahead, in the pursuit of our vision of “A fulfilling life for all people with lupus in Europe until we have reached a world without lupus.” The Strategic plan discussions were concluded by the adoption of the new LUPUS EUROPE logo. Our many thanks go to Patrick and Sandra from, the pro-bono sponsors who designed the logo for us and are now finalising our new website. They have clearly understood what LUPUS EUROPE Stands for: while retaining the symbolic lupus butterfly, it has a vibrant person at its core – just as we have our members and their members at the very heart of our work. We very much wanted a symbol of energy and hope, reflecting the already significantly better outlook for lupus patients today and all our hopes for the future.

This year, Kirsten Lerstrøm, LUPUS EUROPE chair, is stepping down. We cannot thank her enough for 10 years of devoted service and dogged determination to serve the cause of people living with lupus. She has encouraged us to keep the momentum and we look to the future with hope and determination. At the close of the convention, Jeanette Andersen was elected as the new Chair of LUPUS EUROPE, and Alain Cornet was appointed to the newly created position of General Secretary.

We are happy to present the 2018 board who we are sure will continue to serve the best interests of LUPUS EUROPE’s member organisations. From left to right: Katharine Wheeler (Vice-Chair & Secretary), Kirsi Myllys (Treasurer), Anne Charlet (Vice-Chair),  Jeanette Andersen (Chair), Annemarie Sluijmers (Skin) and Sara Badreh (Research & Youth).

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These few lines are just a taster, from a very full convention. More news and a complete convention report will be on its way soon.


Submit your abstract to the EULAR 2018 Congress

Join your peers as they pave the developmental exchange of research and best practice in rheumatology! Submit your abstract to #EULAR2018:

EULAR - European League Against Rheumatisms billede.

World Arthritis Day

It’s #WorldArthritisDay! Check out EULAR´s #DontDelay #ConnectTodaycampaign video featuring Kate, Aran and Simon. Together, we can raise awareness about the importance of early diagnosis and treatment of rheumatic and musculoskeletal diseases. #WAD #WAD2017

You can watch the video here:

LUPUS EUROPE chair speaks at TOPRA Annual Human Medicines Symposium

Tuesday, October 3rd  Chair Kirsten Lerstrøm, LUPUS EUROPE, has been invited to address the TOPRA Annual Human Medicines Symposium; Collaboration – Strategies – Solutions – Global regulatory approaches to improve healthcare. She has been invited to present on How to reflect the needs of patients in drug development programmes  in the session “Involving patients in drug development and how this impacts on regulators procedures and decision making.”

Kirsten Lerstrøm speaking at the European Parliament ENVI Committee on Autoimmune Diseases

Monday, September 25th Chair Kirsten Lerstrøm, LUPUS EUROPE, has been invited to address the European Parliament ENVI Committee on “The case of lupus: Prevention and Treatment of Autoimmune Diseases” at the workshop in Parliament on “Autoimmune Diseases – modern diseases”.


Message is that lupus is complex and complicated both to manage and to live with. Only one new compound in 50+ years has passed Phase III of clinical trials. Cause of disease is still unknown yet a special cocktail of genes and environmental factors can trigger onset of lupus and further direct the course of disease.

Current treatment and practice might keep us out of the hospital bed, but not out the sick bed. Our LEO study1 showed that only about half of us living with lupus maintain connection to the workforce, and the majority of those do so on reduced terms: while diagnosed at the age of 37 (25-45 yrs) and time to diagnosis is 7 years (average); This serious change of life happens at the time of establishing family and career!

There is no vaccine or golden rule of behavior that will prevent disease onset or further development. We have learned though the past few years that treatment plan is a shared decision between you and your treating specialist, so follow this plan. Also considering the typical comorbidities of autoimmune disease are complications from photosensitivity, smoking, level of exercise and dietary adjustment to observe CVDs could improve the general health status.

Current treatment recommendations are anti-malarials (hydroxychloroquine) to provide the long-term lowering general disease symptoms. When this is not enough, further immunosuppresives can be added, like from milder methotrexate to azathioprin, cyclosporine to mycophenolate mofetil. As a fast actor is generally used prednisolone. Only hydroxychloroquine and prednisolone have been approved for managing lupus respectively 1955 and 59.

There is a list of different biologics used in cases where other treatment is not enough or not having the wanted control of disease activity: rituximab, infliximab, etanercept, adalimumab and belimumab – most of which are used/approved for treatment of rheumatic arthritis. It is very difficult to tell when this or that compound has any effect on the individual, which complicates the efficacy assessment. No one set of biomarkers nor treatment  is yet found.

The failing trials of one compound after another is devastating to witness – each time one less option for perhaps better outcomes and improved quality of life.

Lupus is often viewed as the archetype of autoimmune diseases – if the understanding of why and how this disease operates, then perhaps the autoimmune enigma can be solved!

People living with lupus share some further conditions with other rheumatic and/or autoimmune diseases, like serious fatigue, comorbidities, damage accrual not only from autoimmune response but also from treatment and more. Our special lupus aspect is complexity, the early age, the very burden and the mental impact. We need to do better!

Us living with lupus need to get actively involved in the research by not only delivering body fluids and tissue, but also through involvement in the planning and execution of research.

New approaches to find better research tools for classification of symptoms and disease manifestations clinically (ACR/EULAR) and genetically (IMI PRECISEADS), revision of the EULAR Recommendations of Management of SLE and revision of PROs used to capture disease activity – are in the process and with our representation.

Patient representatives have been actively engaged in building of consortia to launch new initiatives to build a better foundation for the lupus advancement in disease understanding, defining trial end-points and improve the patient reported outcome measures. We are part of the newly established ERN ReCONNET. At the moment we have one lupus representative working for EMA, but we also need to be better represented in other regulatory and political settings locally, regionally and nationally as well as internationally.

Sara’s first year

My first year with Lupus Europe – Sara Badreh

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!


London Marathon 2017

Some great news from Lupus UK – Janine, LUPUS UK National Office, organised 5 Runners in the Virgin London Marathon, 23rd April, with £4,290 being raised for LUPUS EUROPE.
THANK YOU for your great work, Janine!

Pictured below are Ed and Charlotte. Well done to you both and the other runners!

For more information on running in the London Marathon for Lupus UK.

Charlotte & Ed Back

Convention call


The summer is a quieter time in terms of events to attend for LUPUS EUROPE but it is not quiet in terms of ongoing projects (including starting to build the next strategic plan for 2018-2023) and getting ready for the convention later in the year.

As you know, this year’s convention will be held from 15th-19th November in Milan, Italy. We’re looking forward to reconnecting with all our old friends and new representatives. If you haven’t already done so, it is time to sign up to attend the convention. The discount for registration ends 15th of July.

We are also looking for further trustee nominations. If you would be interested in getting more involved in LUPUS EUROPE, please don’t hesitate to get in touch with the secretariat or anyone on the board. You can read more about being a trustee in these blog posts: Katharine and Kirsi.

We’re really looking forward to seeing you in Milan for an exciting programme with lots of warmth, information and motivation.




Busy busy!

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The Lupus Europe Board of Trustees (from left to right – Jeanette Andersen, Sara Badreh, Kirsi Myllys, Katharine Wheeler, Alain Cornet (secretariat), Anne Charlet, and Kirsten Lerstrøm

The blog has been quiet recently, and with good reason! We have all been so busy attending events, participating in work groups and meeting face-to-face, that we haven’t been able to keep up on the blog – despite our super-human lupus powers!

Hopefully you’ll know everything that has been going on from reading the newsletter. If you haven’t already signed up to get it in your inbox, follow this link.

Here’s a brief glimpse – not a complete list – of a few things we have been doing:  

  • Sara has attended several meetings, mainly on research subjects. Among others, she travelled to Lisbon in March for the PARE congress, Washington for the Lupus think tank in April, and in May, the Lupus Academy, in Lisbon, Portugal and the 8th EULAR Scientifically Endorsed Course on Systemic Lupus Erythematosus, in Pisa, Italy.
  • The whole board met in March for multi-stakeholder meetings on research (more information below) and clinical trials – and in June to progress on LUPUS EUROPE’s 2018-2023 Strategic Plan.
  • Jeanette, Sara and Anne are attending EULAR this week (meet them at the LUPUS EUROPE / FELUPUS Stand in the EULAR village – V9)
  • Anne and Alain are linking with our partners and sponsors to close the current year’s funding. Anne has also been interviewed for press releases and in videos for World Lupus Day.
  • Katharine attended EPF’s AGM and continues her work with the EPF Access work group, as well as working on creating closer ties with members (Lupus catch-up chats etc.) and working on various aspects of communication (including the blog).
  • In addition to Youth activities with Young PARE and working on preparing the LUPUS EUROPE Youth Patient Panel, Jeanette has also been working on one aspect of the Kick Lupus project – you will hear more during the convention.
  • Annemarie Sluijmers, from the Dutch group, NVLE, has also been co-opted to integrate an EPF group, working on Patient Safety.
  • Ines from the Portuguese group was instrumental in creating the social media campaign during the month of May. Special thanks must also go to Lupus UK whose material inspired the campaign. In addition to the combined World Lupus Federation campaign, we were all delighted with the social media campaign and the number of people who translated and shared.
  • Our friend Nick Hicks, has been helping us to work on the building of a “Voices of lupus” campaign, building on the testimonials collected in Würzburg.

201502_eupatiWe are also delighted to announce that Jeanette, LUPUS EUROPE’s secretary has been accepted for the EUPATI PATIENT EXPERT COURSE which will begin on the 4th of September 2017 and will run for 15 months.

The EUPATI Training Course – Patient Experts in Medicines Research & Development is an exciting and unique opportunity offering patient advocates expert-level training in medicines research and development, specifically tailored for them.

Upon completion of the course, you should have the knowledge to allow you to make a meaningful contribution to the medicines research and development process, with the aim of providing better medicines to patients. You will also be able to generate a broader dialogue around future patient involvement in the medicines research and development process across Europe.

There is a great need for patient experts in lupus! We need better treatment of our disease and this starts with research. Here patient experts play an important role, because they know how it feels to live with the disease and follow the treatment. Patients and researchers might not always have the same priorities when it comes to developing new treatments for the disease. Often the patient will focus on the side-effects of the treatment and a better Quality of Life, where the researcher is dedicated to minimizing disease activity at (almost) any cost.



World Lupus Day – In addition to the other World Lupus Day activities, you may also have seen the videos, starring Anne, LUPUS EUROPE Vice-Chair, and her wonderful daughter Amélie, speaking up for young people with lupus.

A personal World Lupus Day experience – Hate the disease, love the people!

“This year for World Lupus Day, to continue efforts of awakening public awareness of lupus, Neovacs*, the French Biotech company, decided to create testimonial videos, and publish press releases.  They asked me if I would be willing to talk on video about lupus – they would provide the questions and the cameraman. That’s not an offer one refuses!

So, days before May 10th, the journalist and the cameraman came to my apartment and set up.  “This will only take 15 mins”… two hours later they left with four videos in their bags.  Even if one is used to speaking in public, being filmed is very different and causes more stage fright than I expected.

But they asked the right questions, and let me start and start again, over and over.  And while I was filming, my daughter Amélie watched on to make sure that I didn’t say anything too far off topic or too far from the truth.  And as she watched, I happened to mention that it was Amélie who was the patient and the reason I was at all involved in Lupus Europe.  Their eyes lit up and they turned to her.  She smiled timidly, understanding what they were interested in, and said, ok, if they wanted, she would also say something on video.

In my videos, I answered their questions as best I could with a lens pointed straight at me, trying hard to remember all key points that I had prepared in a phone discussion with Bernadette (chair of French speaking Lupus Belgium).

But once I watched the videos, it struck me how, no matter how schooled what I had to say was, it was the honestly and simplicity of that young woman, my daughter, speaking from her heart, that felt true and meaningful, and was the real message.  She lives with lupus in her, waiting to pounce when she least expects it, but she lives well, so strong, and that’s what we see on the video.

And in the end, that is the true World Lupus Day message: live your life as best you can, sometimes maybe even forgetting you have lupus, but live like no-one else knows”.

Anne (

You can access the videos on LUPUS EUROPE’s Youtube channel 



This year´s theme will be pain, fatigue and stress and the programme will combine valuable speakers, interactive workshops and sharing sessions. This will also be the occasion to collect your final input on our 2018-2023 Strategic plan, making sure all our energy is focused on what most matters to achieve our vision of “A fulfilling life for all people living with lupus, until we have reached a world without lupus”.

3 trustee positions are up for election at our Milan 2017 Council meeting. If you, or anyone in your national team, would be interested in joining LUPUS EUROPE’s Board of trustees, don’t hesitate, apply through your national group!

See more about being a LE trustee on our blog: or contact one of our current trustees.

Applications should be sent to the Lupus Europe Secretary at (; by July 15, 2017.


LUPUS EUROPE is currently preparing for its next strategic plan from 2018-2023. As a result, we have had extra meetings, including a face-to-face meeting over two days with multiple stake-holders on the subject of research and clinical trials.


As part of its work to define its 2018-2023 strategic objectives, LUPUS EUROPE decided to gather input from multiple stakeholders on where it should focus its efforts in the particular area of Research. To achieve this, LUPUS EUROPE held 3 different panel sessions, and gathered input from members through a survey.

The webinar with our medical panel concluded that we should make patients increasingly aware of the valuable and critical role they ALL have to play in Research. LUPUS EUROPE could leverage its European dimensions and use the new ERN to foster collaboration. It could step up Advocacy to make healthcare more accessible. Finally, LUPUS EUROPE could help understand the total burden/cost of the disease, not just medication, but also all direct and indirect impacts.

The industry panel concluded that LUPUS EUROPE could make a meaningful difference by ensuring higher awareness and education on lupus and clinical trials and establishing a panel of “experts” that can connect the patient community to the scientific community and provide advice and support from the very initial stages of research all the way to effective access through treatment plans.

The discussions with other Patient organisations highlighted the critical need to connect with existing structures to avoid non-productive duplication of efforts and amplify our work, and the complexity of setting priorities that will satisfy at the same time the short term aspirations of our members and the investment needed in building capabilities of patients to support research.

Finally, the members survey showed that 87% of them feel engaged in lupus research. 47% promote and encourage participation of their members and 40% raise funds. 47% actively participate and support research by providing expertise, and 20% run some research on their own. With regards to Research, they would set LUPUS EUROPE priorities on (a) Running qualitative research(patients focus groups) and quantitative research to better understand living with lupus; and (b) disseminating results of research in laymen language. Next to Research, they would like LUPUS EUROPE to put more priorities on members (creating synergies, …) and to increase awareness / speaking for patients in general or specific events.

This input will be essential for the board to build its 2018-2023 Strategic plan. For more information, please contact the secretariat (


Open letter – Make health a priority – Please support!

As discussed during its Annual General Meeting last month, the European Patients’ Forum is deeply concerned with the very uncertain future of European health collaboration and of the Health Programme post-2020. The five scenarios proposed by the European Commission Mr. Junker in April show that health is not a priority for the European Union.

To voice concerns and initiate what is hoped will be a fruitful dialogue on the future of health at EU level, 39 health organisations, including EPF and several of its European members, sent an open letter to Mr. Juncker on 6th June.

The objective of the letter is to reiterate the view that health is absolutely and unequivocally a central topic for the EU, and to open a dialogue.

Please support and share the open letter found which you will find below. You can also find it here as well as tweets to share at this link.

Dear President Juncker, EU Health Collaboration is crucial for Europe’s future

Brussels, 6 June 2017.

To: Jean-Claude Juncker, President, European Commission

cc: Frans Timmermans, First Vice-President, European Commission

Vytenis Andruikaitis, Commissioner, DG Health & Food Safety

Günther Oettinger, Commissioner, DG Budget & Human Resources

Carlos Moedas, Commissioner, Research, Science & Innovation

EU Health Collaboration is crucial for Europe’s future

Dear President Juncker,

We, the undersigned organisations, representing EU health stakeholders, wish to express our grave concern about the future of health in European policies and programmes, in the light of your White Paper on the Future of Europe, and propose an urgent meeting with you and your services on this topic.

Our determined view, shared by the vast majority of EU citizens, is that health is absolutely and unequivocally a core business of the EU. Protection of a high level of human health and wellbeing is entrenched in the Treaties of the European Union[1]. EU collaboration in the field of health is indispensable for the future of Europe and rebuilding the trust of citizens in the European Union. We need more health to unlock the full potential of economic and social policies.

70% of Europeans want the EU to do more for health, according to the most recent Eurobarometer survey. With such a strong, unequivocal demand from EU citizens for more action in the field of health, it is essential that this is not only maintained, but actually enhanced. The EU needs to continue deliver results that make a tangible difference in the daily lives of its citizens and thus re-establish people’s trust in its institutions.

Health protection and improvement is a great success story of the European Union

Life expectancy is rising across the EU. Accession to the Union is positively correlated with health gains and longer lives. Without EU level action and support of the Health Programme, EU citizens would be more at risk from health threats. Whilst there is a need for continuous improvement, protection standards for patients, consumers and workers are amongst the highest in the world, thanks to EU legislation. Indeed, European integration and collaboration has brought great benefits for our health and provides vital resources for our health services: free movement of health professionals, health technologies and patients. We are assured of our right to treatment in other member states, under common minimum safety and quality standards. We are also reassured that, thanks to cross-border collaboration, highly specialised expertise will be shared across borders, as the EU has just embarked in one of its most promising transnational initiatives, the European Reference Networks for Highly Complex and Rare Diseases – an area not only where EU-wide strategies are effective, but also where the added value of EU action is striking.

This is thanks to EU legislation, rights and protections which complement national laws.

It is impossible to imagine a functioning internal market which does not consider and protect the health of its citizens, patients and consumers. Economic growth can only be built by healthy and resilient populations.

EU coordinated health action saves lives and reduces the burden of disease

By facilitating closer cooperation, the EU has saved countless citizens’ lives and contributed to their improvement. The Health Programme is a vital enabler for health policy formulation and for effective implementation and it has, over several years, triggered shared good practices on complex health topics for which EU cooperation is essential (such as patient safety and quality of care), encouraging upward convergence.

The conclusions of the previous Health Programme evaluation were extremely positive, with evidence of its impact beyond its relatively modest (financial) size, and exchange of knowledge and experience between member states which would not otherwise have taken place. Moreover, it “made it possible to develop many activities… where the economic situation and budget restrictions would not have allowed them to be made a priority” – now more critical than ever, when national health budgets are under even more pressure. The Programme was seen as providing value for money, and particularly important for ensuring a human rights-based approach to health policy.

We are therefore profoundly concerned that some of the scenarios in your White Paper on the Future of Europe would even consider reducing European action, cooperation and legislation and to step back from the protection and improvement of our health in Europe.

Instead, this role must be enhanced in the future through a new robust and ambitious Health Programme, convening member states to cooperate on health, underpinning vital collaboration with other institutions such as WHO and OECD and supporting health research.

Unprecedented health and social challenges can only be tackled at a European level

There has never been a stronger case, or a more vital moment for Europe to work together to protect our health.

Whilst life-expectancy has improved, the years gained are often lived in relatively poorer health due to the proliferation of preventable chronic diseases, compounded by huge disparities that persist within and between member states. Average life expectancy is 12 years shorter for a man in Lithuania than in Italy. Discrimination and inequality remains widespread when it comes to access to healthy living conditions and healthcare. For example, the lives of Roma people and refugees are expected to be 10 years shorter than national averages and homeless women in Europe die on average at just 43 years of age because of the multiple health disadvantages they face. The Lisbon Strategy included a target of adding two healthy life years across the EU by 2020, a target that still needs to be met.

Europe is facing important health threats which must become a top priority for this Commission. Our precious, life-saving antibiotics are declining in effectiveness. Antimicrobial resistance is taking hold more rapidly around the world than expected. No single country can tackle that challenge alone. Bacteria and drug resistance cannot be stopped by borders. The alternative if we fail to act is unimaginable: 10 million deaths globally every year by 2050[2]. Rich countries will not be immune. Those of us from countries which take high quality healthcare systems for granted arguably have the most to lose.

National governments were expecting, and calling for, European Commission support in the form of a chronic disease strategy. The majority of Member States want more EU action for health, especially disease prevention and support to increase the safety, quality and efficiency of care, to aid their own efforts to make their health systems more sustainable.

Common challenges to Europe’s health systems require common action

National governments remain responsible for their health systems, but European health systems face common challenges – a necessary shift from disease-focused, hospital-centred care to person-centred, long-term chronic disease management where patients, families and communities play a key role.

Member States thus need cross-border support, in the form of expertise, coordination, exchange of data, evidence and best practices, and programme financing.

National governments cannot address the threats to health and health services alone. We face common challenges from drug-resistant infections, spikes in chronic diseases, obesity, alcohol-related harm, infectious diseases, emerging technologies, rising prices of medicines, and inequities in access to healthcare, that can be tackled together far more effectively.

Looking ahead: Commit to Health and Sustainable Development

Looking ahead, the EU must not shy away from stronger engagement in the field of health. On the contrary, the challenges we are facing and the opportunity to continue demonstrating to European citizens the added value of the EU action on health, compels health to become a EU flagship policy that promotes stronger protection for patients and consumers and ultimately improves people’s lives.

If the EU steps back from protecting patients and consumers and improving our health it would irreparably damage the institutions’ credibility and trustworthiness.

Therefore, a strong future Health Programme is crucial, not least to ensure that voices from civil society – patients, consumers, health professionals, epidemiologists and technical experts – are represented in policy dialogues which build on all available evidence and expertise.

For this we need strong high-level leadership inside the Commission, with specific responsibility for health. Mainstreaming health in other Commission Directorates will not work without stimulus, guidance, knowledge, expertise, and leadership from a strong Directorate for Health.

This is evidenced by recent developments on the Digital Health Agenda, and the symbiotic relationship between DG SANTÉ and DG CONNECT. Other EU policies will be jeopardised without an appropriate health policy lens. Efforts around the Social Pillar and the European Solidarity Corps are not replacements for health leadership within the Commission but rather, should be highly complementary measures to ensure maximum impact on the ground.

The EU has committed to deliver the UN Sustainable Development Goals both within the EU and globally, with a key goal on health.

Health is also high on the international policy agenda – the G20 under Germany’s leadership is discussing antibiotic resistance. This is because health and access to good quality healthcare and social care are primary concerns for everyone. Yet international institutions lack the mechanisms for real implementation that make a difference to people’s daily lives.

This makes the EU’s role – and the necessity to do more, not less – absolutely key. This also requires health leadership and expertise within the Commission working in concert with the health community.

In conclusion:

We call for an enhanced EU action in the field of health that brings the EU closer to its citizens, by protecting patients and consumers and improving people’s health. We call for a EU action on health that fosters cross-country collaboration, integrates the action of Member States and helps them to address the unprecedented challenges we are facing. We call for EU action on health supported by a robust EU Health Programme and the leadership of a dedicated Directorate in the European Commission.

We request a meeting with you at your earliest convenience to explore these issues in more detail and agree a viable way forward.

Yours sincerely,

Archie Turnbull, President, European Public Health Alliance

Marco Greco, President, European Patients’ Forum

SIGNING ORGANISATIONS (in alphabetical order)

Alzheimer Europe ⧫ Association Internationale de la Mutualité ⧫ European Alcohol Policy Alliance (Eurocare) ⧫ European Alliance of Neuromuscular Disorders Associations (EAMDA) ⧫ European Association of Hospital Pharmacists (EAHP) ⧫ European Association for the Study of the Liver (EASL) ⧫ European Cancer Leagues (ECL) ⧫ European CanCer Organisation (ECCO) ⧫ European Cancer Patient Coalition (ECPC) ⧫ European COPD Coalition (ECC) ⧫ European Disability Forum (EDF) ⧫ European Federation of Allergy and Airways Diseases Patients’ Associations (EFA) ⧫ European Federation of Families of People with Mental Illness (EUFAMI) ⧫ European Federation of National Organisations Working with the Homeless (FEANTSA) ⧫ European Federation of Salaried Doctors (FEMS) ⧫ European Health Management Association (EHMA) ⧫ European Haemophilia Consortium (EHC) ⧫ European Institute for Women’s Health (EIWH) ⧫ European Liver Patients’ Association (ELPA) ⧫ European Multiple Sclerosis Platform (EMSP) ⧫ European Network of Fibromyalgia Associations (ENFA) ⧫ European Network for Smoking and Tobacco Prevention (ENSP) ⧫ European Parkinson’s Disease Association (EPDA) ⧫ European Partnership for Improving Health, Equity & Wellbeing (Eurohealthnet) ⧫ European Patients Forum (EPF) ⧫ European Public Health Alliance (EPHA) ⧫ European Umbrella Organisation for Psoriasis Movements (EUROPSO) ⧫ Fertility Europe ⧫ France Assos Santé ⧫ Global Alliance of Mental Illness Advocacy Networks-Europe (GAMIAN Europe) ⧫ Health Action International (HAI) ⧫ International Federation for Spina Bifida and Hydrocephalus (IF) ⧫ Lung Cancer Europe ⧫ (LuCE) ⧫ Mental Health Europe (MHE) ⧫ Platform for International Cooperation on Undocumented Migrants (PICUM) ⧫ Rare Diseases Europe (Eurordis) ⧫ Retina International ⧫ Royal College of Physicians (RCP London) ⧫ Smoke Free Partnership (SFP)

Lots of activity for World Lupus Day


And lots of activity ties in well with “Kick Lupus” of course 😉 For more information on Kick Lupus please read here.

There have been so many initiatives for World Lupus Day it’s difficult to name them all but here are a few that deserve to be highlighted.

The World Lupus Federation, of which LUPUS EUROPE is a founding member, has released an e-report and a press release entitled “Inactivity, Isolation and Impact on Daily Life are Top Concerns for People Living with Lupus.”

Our LUPUS EUROPE Vice-chair, Anne Charlet, has also been interviewed by Neovacs in France. Neovacs has released a press release for World Lupus Day. Together they have also created a series of four videos on various topics. One of the videos features Anne’s wonderful daughter who was kind enough to share her experience as a young lupus patient. The video links are below.

Testimonial – A young person living with lupus

What is lupus?

The role of patient organisations

The importance of clinical trials

And of course, watch out for our awareness campaign, running all this month on Facebook and twitter. Feel free to share (many of our members have also translated the campaign into other languages).