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Dear Members and Friends,
It is well into Spring now, bringing flowers in the gardens, birds singing in the trees, and slowly, slowly, people in the streets, laughing and happy… We have been through such difficult times, but finally as many countries begin to open up, people get vaccinated, we begin to feel there is some hope, and we can start making plans for the future, we have something to look forward to.
One of our strongest desires is to finally be able to meet all of you, face to face. Perhaps not hugging, maybe with masks, but simply enjoying each other’s presence. With that goal in mind, we’ll be talking about the Lupus Europe Convention for this year.
And while we have been sheltering at home, we’ve all learned to work in a new way, to the point where it’s almost become a normal way to work. The Lupus Europe board was able to hold an industry roundtable, as we’ve done for the past four years, but which is always well-attended, with such positive feedback from our sponsors.
Some of us have been really busy, involved in scientific pursuits, capitalizing on the survey work, by taking part in writing and getting papers published in Scientific Journals! Getting papers published brings credibility and recognition to Lupus Europe, all with the aim of getting better treatments and kicking lupus off the edge of the map!
We are also launching this year’s version of Kick Lupus, which is all about appreciating those around us. We would not have been able to get through this year as well as we did without the help from our friends, this competition will honor them.
We’ve been attending online meetings with EPF, EURORDIS and Global Skin Europe, among others. We’ve also been having catch-up calls with many of you, gathering lots of your news, and learning about your interesting actions. Lupus Europe wants to share all that new information with all of you, and so is hoping to spotlight a member country on the Lupus Europe blog.
We have also been busy on social media, connecting with the “wise” ones, and discussing the different sets of problems that come with Lupus as we age, in a Seniors with Lupus Panel.
And finally, as always, we reach out to you, to have you consider joining this group, the Lupus Europe board, or the PAN. These groups are constantly renewing themselves, not all at once, but every year one or two places open up: people come, give a few years of their time, and then go back to their country groups, or perhaps even on to newer horizons! But if you are at all interested in getting a more European perspective, think about it, talk to anyone of us, join a meeting. Don’t worry about your level of English!! If you can understand what is written here, your level is fine. And your spoken English will only improve, but no-one expects you to do anything other than express yourself as best you can!
We are doing as much as we can to make sure we can see you soon, but in the meantime, stay safe while enjoying the awakening of life around use, and the promise of a limitless summer.
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Anne Charlet
LUPUS EUROPE Vice-Chair
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EULAR 2021 Virtual Congress
taking place on 2-5 June + on-demand until 5 July!
Every year, thousands of Rheumatologists, health care professionals, researchers and patients meet at the European League Against Rheumatism Congress, the biggest event for Rheumatic diseases in Europe.
The EULAR 2021 Virtual Congress is open for registrations!
There are four days of very interesting sessions!l
Learn all about the latest SLE research.
to register click on the link here
the registration price is 35€ for patients!
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SENIOR Volunteers
help us make LUPUS EUROPE more IMPACTFUL!
Are you (or someone you know) more than 60 years old,and living with lupus for more than 20 years? We need you to better understand what lupus really means on the long run…
So much remains to be discovered about living with lupus, and some of that will only be known if patients speak up. One of LUPUS EUROPE’s activities is to run patient panels, where 12 to 15 people living with lupus get together to share their experience on a specific topic. The 2 days’ workshop is animated by people living with lupus themselves, which creates a very friendly atmosphere.
After a very successful panel on “young with lupus”, our next panel (likely end November) will explore the other side: What is it like to be “senior”, after many years living with lupus. What issues do you face, what are your concerns or unanswered questions, what makes you feel better or more optimistic?
If you would like to help us by giving your thoughts and experience, please apply by sending a short email to secretariat@lupus-europe.org.
Applicants should meet the following criterions:
[1] Be at least 60 years old,
and have lived with lupus for at least 20 years
[2] Live in Europe
[3] Be able to interact with others in English
(no need to be an English expert!)
[4] Be willing to share your experience with others
For the patient panel, we are searching for people that are representatives of the European lupus community. It is hence preferable that applicants are NOT trained as “patient experts” and are NOT leaders of patient groups.
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we are recruiting volunteers
Patent Advisory Network Members
are you the right person?
The Lupus Europe PAN is a team of 15 to 20 trained and energized patients, experienced in living with lupus, appointed by LUPUS EUROPE to act as liaison and resource to value-adding scientific projects, clinical trials and other research related to lupus, including EULAR task forces, SLEuro initiatives and ERN Research.
PAN members who connect the patient community to the scientific community. The PAN
provides prompt, reliable and consistent advice and support from the very initial stages of research all the way to effective access through treatment plans.
We also have a special PAN member function for working with the European Medicines Agency (EMA). Any PAN members working with the EMA on projects cannot work on industry projects.
Are you interested in joining the Lupus Europe team?
You can apply to be a member of the Lupus Europe PAN
by e-mailing jeanette@lupus-europe.org
or zoe@lupus-europe.org
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KICK LUPUS 2021 Competition
My Covid19 Lupus Hero Competition 2021
This past year has been very difficult for so many people around the globe. But positives can often be found even in crises and difficult circumstances! Finding the positives and holding onto them is the spirit of Kick Lupus! With that in mind, we want to announce the Kick Lupus 2021 Competition, My Covid19 Lupus Hero!
Is there a special person whose support for you really shone through this past year, through the covid19 crisis?Did someone make life easier for you in a practical way? Was there someone you could always rely on to provide emotional support during this crisis?
The Covid19 Lupus Hero Competition 2021 is your chance to nominate that special person for a Covid19 Lupus Hero Award! A Covid19 Lupus Hero may be your neighbour who has been going shopping for you during the pandemic, it might be someone in your lupus clinic who has made you feel safe when you’ve had to go in for reviews or treatment or it might be a friend who has been diligent about keeping in touch in various ways throughout the year, even though you couldn’t meet in person. Who is your Covid19 Lupus Hero?
To enter the Covid19 Lupus Hero 2021 Competition you have to send us a nomination. Let us know about your hero! You can do this in the format of your choice, whether that is a 30 to 60 second video, a short e-mail, an essay of a few paragraphs, a drawing with a short text, a cartoon or any kind of format you choose!
To take part you have to meet the following conditions:
[1] Be a lupus patient living in Europe
[2] You must make the submission yourself,
in whatever format you choose
[3] You must have the approval of the person you are nominating to share their information with us
THE PRIZE
The winner of this competition and their Covid19 Lupus Hero will both be invited to the Lupus Europe 2021 Convention which we hope will be in Bratislava!
send your submission to zoe@lupus-europe.org
deadline submission June 21, 2021
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GlobalSkinOrg partnership
skin issues awareness
Lupus Europe is getting more involved with raising awareness of skin issues related to lupus. Through our partnership with Globalskin, we are now also connected in the new community of GlobalSkin (IADPO): GlobalSkin-Europe.
GlobalSkin-Europe has been put together to unite the voices of European (Rare) Skin Patients in pursuit of a common goal: getting medical dermatology on the European policy agenda. Annemarie Sluijmers is a member of the GlobalSkin-Europe Advisory Committee.
know more
about GlobalSkinEurope here
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Questions for RUSSIA
Answers from Russia
How do you keep in touch with or have contact with your members? We are a group of patients who are located in Moscow, therefore we can easily meet in person as we’re all in the same city. We regularly exchange messages in Messenger and we can call each other; keeping in touch with each other is very easy. As we said in our video in November during the Lupus Europe 2020 Convention in the Clouds, Moscow is not the entire country of Russia. What we mean is that the situation in Moscow is better than in the country. We have everything in Moscow; hospitals, rheumatologists, everything. In the regions people suffer greatly and very often they have to go to Moscow to get medical help. Luckily there is a special governmental medical program through which people can get subsidies to come to Moscow. So they can get paid for transport and the hospital. This program is available; there is a lot of paperwork to complete to do this but it is available. If people fight for it, they can get it.
Did you have any special meetings or webinars during the past year (World Lupus Day, Rare Disease Day, Annual General Meeting etc)? Yes of course! We made a number of special meetings and webinars for lupus patients in the last year! We had a conference on the rights of patients, a school for lupus patients webinar, a lecture by Professor Solovyov on lupus diagnosis and treatment and so much more! I have to say that in RRA Nadezhda, the big Russian rheumatological organisation our lupus group is a part of, we also have access to psychologists for support and help. These psychologists are there to help patients with rheumatological diseases, they get a salary from the government to do this; this is a project that was approved and was praised highly. Now we have psychology webinars every week with them on topics such as how to stay calm and to get through a difficult period before you get to remission, how to live with the disease et cetera. The psychologists are doing a very good job! Last week I joined yet another group that is available to us through the organisation – art therapy. This happens once a fortnight online through Telegram, a channel for art therapy. Before art therapy we have a webinar; we do home tasks, we post these tasks along with music that inspires us on Telegram for art therapy and it helps. We’re also really proud of our rheuma factor youtube channel! There is so much information on this channel, lots of videos are being put there and many people watch it. We can see how many people watch the videos and we believe it’s so popular because rheumatologists, doctors of other specialties and patients speak in the videos. Now we’re preparing for May for World Lupus Day; I have posted a poll for lupus patients on social media so they can name the topics and write the questions they would like to ask doctors. I have to admit that the lupus community has grown during the pandemic. Lupus bloggers became more sincere, more open and there are more than twenty lupus bloggers in Russia who blog once or twice a day on the disease, on lupus. It’s very good for telling the world and people about lupus and about life with lupus. We are very happy about that!
Has it been difficult to keep connected with your members during the Covid19 pandemic? No it hasn’t been difficult at all. We have different communities on different social media. Our most active group communicates via Messenger. We are all Instagram bloggers too, so we communicate through Instagram every day. I have been writing about lupus since 2014 (Anna). Many of our members share their experiences on social media regularly. We have our own sources we can use for articles and blogs; we also take information from sources like the Scientific Research Institute of Rheumatology. We use information from many other sources as well, from Europe from the USA too.
Has Digital Health improved or changed in your country? Yes, it has. We now have online consultations and during the worst days of the pandemic two hospitals in Moscow provided phone help for lupus patients, so there was a hotline where people could call and get help. If they were in a lupus flare they could even get hospitalised; it was possible to do this during the worst days of the pandemic, but this is Moscow. In the regions it was not possible for lupus patients to get hospitalised, but they could call the hospitals in Moscow and get help from the hotline. Digital health has improved greatly during the pandemic, it had to adapt to the realities. Lots of patient letters were sent to the government with complaints because people died without the necessary help during the pandemic but not of covid, of their existing rheumatic diseases. The Russian Rheumatism Association did a really good job and helped patients in this process. People now can even find a rheumatologist in their city or town by looking through a website. Doctors- rheumatologists and other specialists- also have Instagram accounts here and they make webinars that everyone can join and listen to; this is a growing trend too. People can get an online consultation from such doctors too – this started during the pandemic.
What would you most need as support in your country for lupus?There is a big need for support in every country and in Russia too. People have no idea what lupus is, diagnosis takes a very long time, and people don’t understand. People often say “you don’t look sick” or “you are so young, you can’t be sick”. Mostly we are young and we look healthy so people don’t understand that we don’t look like ill people, but we have a disease.
About vaccination we listen to the scientists. Lupus patients are now waiting for the inactivated vaccine. This is being tested now and until we get it, it’s not recommended for us to be vaccinated. Having said that I know 20 people with lupus who have been vaccinated with the vaccine Sputnik-V and they feel ok, they haven’t had any aggravations of their disease or problems.
Is there anything you think Lupus Europe could help your organisation with? We are very interested to communicate with you in LUPUS Europe and we would like to join your organisation as members. We would like to join as part of RRA Nadezhda, we are a group of lupus patients within a larger rheumatism group. I think we can learn a lot from you and we have something to share too, especially our digital activities which we are very proud of.
Is there any topic/theme/area that you think Lupus Europe should focus on, on something where European collaboration would make sense? I think we should all focus on making the lupus community more open. Because of language barriers, many patients feel cut off. Communicating with lupus patients from around the world helped me a lot- I could only do that because I speak Russian, English and French. So I think good translations are needed, translations of documents to get resources and data to people. We have translators who can help do this. We take part in online polls for lupus patients every week, sometimes twice a week. We are especially interested in scientific research concerning lupus, because in Russia there hasn’t been such research in quite some time. We have a brochure for lupus patients, we published it and we give it to all lupus patients we come across. It’s scientific, talks about the disease, how to live with it and it has been written by rheumatologists and approved by rheumatologists,– it’s a very good brochure. This and resources like this could be translated and given to patients – these are good, existing resources for people. The brochure is available online and in print. Patients who come to the Institute of Rheumatology get this brochure; they find it helpful and they think lupus doesn’t mean death after reading it.
Is your group interested in becoming a member of Lupus Europe?Yes! We would like to join your organisation as members. We would like to join as part of RRA Nadezhda, we are a group of lupus patients within a larger rheumatism group. We would also be interested in taking part in activities where you teach groups and patient advocates how to work with patients and how to fundraise. LUPUS Europe Secretary Annemarie Sluijmers commented – “we do have partners who have such activities and we would be more than happy to share the knowledge of how to do it and who to contact to apply to get such training. Funding is an issue for a lot of organisations.”
Could you tell us a bit about a dream you have as a group? Our dream is to make an all Russia lupus organisation. Being part of Nadezhda is good; I think we can achieve more as a separate organisation, but this will take time and effort. To do this we need funds! The situation in Russia is such that pharmaceutical companies do not act as sponsors for lupus organisations. They sponsor and help RA, scleroderma and other diseases, but not lupus,. Companies here tend to invest in doctors, but not in lupus patients. Very recently one company contacted us and asked us for our networks, but before then no company had ever taken any interest. We have made several attempts to communicate with pharmaceutical companies without success. When we go to conferences we also face a difficulty; companies tend to compensate the individual speaker and not the organisation. We need them to compensate the organisation and when that doesn’t happen, we are left in a difficult spot. If the individual doesn’t accept the compensation, then they are doing work for free, but if they do then the organisation does not get compensated and the organisation should get compensated versus the individual person. This is our position and this is very difficult. Also our ethics does not allow to take direct sponsorship from pharmaceutical companies to promote products – we promote all available treatments to patients and always refuse to promote specific treatments or products.
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Lupus Europe Convention
BRATISLAVA 2021
We are very hopeful that the 32nd Annual Lupus Europe Convention 2021 will be held in Bratislava in September. We have solid hopes that a great number of participants will be vaccinated against COVID19 by then and that we will all be able to safely meet again in person for this Convention! The 32nd Annual Lupus Europe Convention 2021 will start on Friday morning 24th September and it will finish on Sunday 26th September.
Building on the great work of our Convention in the Clouds 2020, we will bring our members an exciting programme for a brilliant convention. The board of Lupus Europe has decided that this year’s Convention will be a hybrid one, combining an in-person Convention with a Virtual one for some of the sessions.
We believe a hybrid convention presents a unique opportunity to allow our members to “meet” people that we would not be able to invite at a face to face convention. It also presents an opportunity for delegates and members who are not able to physically able to attend the Convention to be with us for those sessions that will be available virtually!
The theme of our Convention this year will be HEALING. We are working on having a full, exciting, interactive programme planned complete with lectures, workshopsand plenty of opportunities to re-connect with all our friends in person!
Registrations will open in June!
Any questions? Don’t hesitate, simply send a message to secretariat@lupus-europe.org or zoe@lupus-europe.org, we will be delighted to help.
we look forward to
seeing you in Bratislava!
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Industry Roundtable
On the 22nd of April there was a virtual industry roundtable
We would prefer to do these in person but given the ongoing pandemic we decided to go virtual (like most meetings currently). We invited our partners old and new from the pharmaceutical industry to talk about the work of Lupus Europe.
Jeanette kindly led by updating on our work in 2021, followed by Annemarie’s slide detailing our plans for World Lupus Day on the 10th of May and our upcoming 2021 convention.
Alain then presented “20 facts on Living with Lupus in 2020” in which he highlighted the key findings of our survey research.
Jeanette went on to announce that Lupus Europe has had three scientific articles published, something that we are very proud of and couldn’t have done without the amazing support of our members! We got almost 6000 replies to our Living with Lupus survey!
The roundtable then moved onto some interactive discussions; firstly Covid 19 and its impact on patients, Lupus Europe, minority groups and clinical trials led by Klaudia and Amy. This included access to care, availability of hydroxychloroquine, covid vaccination and the impact of clinical trials.
Cassie led our second discussion topic which elaborated on clinical trials and awareness and how we as a patient organisation can ‘bridge the gap’ between patients and pharma; we need new treatments so need to find the best way to work together to achieve this.
Anne then discussed access to care issues faced by our members, the role of the European reference network (ERN) and how important centres of excellence can be for the Lupus patient.
Alain concluded the roundtable with the concept of our next survey! A possible ‘all purpose’ survey in which we ask the top 20 questions that our community want answered!
A very positive, interactive, and collaborative
first industry roundtable of 2021
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Our Two Lupus Europe 2020 Surveys
are now published in Peer Reviewed Journals
Thanks to an incredible participation, we have gathered important information, and the papers, written by LUPUS EUROPE members (with the appreciated guidance and support of leading European lupologists), have been published in “Lupus Science and Medicine”, where their results are now available for the broad lupus community.
The Hydroxycholoroquine (HcQ) availability survey identified that more than one lupus patient out of 2 experienced supply issues for HcQ (usually Plaquenil) in the heat of the speculations about its efficacity against COVID19. It showed that the measures asked by Patient organisations and taken by EMA, national health authorities and the pharmaceutical industry have been effective to ultimately resume proper availability. The study further highlighted the high or very high anxiety that 56.1% of patients faced due to unavailability of their medication, and that even after supply resumed normally, 27.4% were still anxious about on-going supply. The paper also discusses stockpiling behaviours and how pharmacies dealt with it and provides national level details on the above. You can find the publication at this link here, or on the Lupus Europe website here.
The Survey on Living with lupus in 2020 reached absolute record participation. Thank you to the 5,922 of you that have participated! It is thanks to you that we have been able to reach undisputable conclusions on the impact of lupus on Quality of Life, studies, career, family and couple. The study also highlights the huge variations in symptoms that people living with lupus face, showing for example that depression and anxiety are frequent, and their handling often insufficiently considered. The review concludes with an assessment of the various dimensions of access to care at the European and National level. The publication is available here or on the Lupus Europe website here, where you can also find a short and easy to follow slide deck with 20 facts about Living with lupus in 2020 here.
A big thank you to all participants to the surveys, but also to those that helped with translation in 18 languages(!), to our national members that have relayed this survey with insistence to their members, to the LUPUS EUROPE PAN members (and particularly Kirsi, Jeanette, and Angela, co-authors), to Alain Cornet as well as our Medical Board members, Dr. Chiara Tani, Prof. Marta Mosca and Prof. Laurent Arnaud who have guided us in the writing and submission of the manuscript and helped us with all the medical and statistical validation of our findings.
THANK YOU TO ALL INVOLVED!
more surveys will be coming
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