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Dear Members and Friends,
I hope you and your family have all had a happy and peaceful holiday and a great New Year´s celebration. 2021 didn’t turn out quite as we all thought it would and it looks like we will have to learn to live with Covid in some form or other going forward. Luckily, treatments are becoming much better and with vaccines, the new monoclonal antibodies and antiviral pills even most immunosuppressed patients will have a milder course of the disease.
We are optimistic about the future both when it comes to Covid and when it comes to new lupus treatments. 2021 saw the approval of the new drug Anifrolumab by the FDA [1] in the US and we are expecting EMA [2] to follow in 2022. New drugs do not mean a cure for the disease (yet), but the more different treatment options the physicians have to choose from the better the treatment of the individual patient will be.
In this newsletter, you can meet Dalila Tremarias who is joining us as a Co-Opt to the Board of Lupus Europe. Dalila is also a member of our PAN and we are excited to see her join the Board as a Co-Opt.
We are always looking for new volunteers to help us in our work for all lupus patients in Europe. In the video from Klaudia Kępa, you can learn about what it means to be a Co-Opt for Lupus Europe.
The Board took part in the face-to-face meeting of the Board of Directors in Leuven in November, where all members of the extended Board (except Zoe and Jeanette) met to discuss Lupus Europe´s priorities for the next year.
Anne Charlet, who is Lupus Europe´s Vice Chair, has joined the EFPIA [3] Patient Think Tank Steering Committee in 2021 and is writing a piece about why Lupus Europe is part of the EFPIA Think Tank.
Annemarie Slujmers, who is Lupus Europe´s Secretary, has a special interest in skin issues. She has joined the GlobalSkin-Europe [4] Advisory Committee in 2021 and is writing about her involvement.
Each year Lupus Europe has a new Kick Lupus competition, where our members can share how they best live a fulfilling life with their lupus. Normally, the winner is invited to receive their prize at our next Convention, but because of Covid we had to come up with an alternative. In this newsletter you can meet this year´s winner, Chryso Yiasoumi from Cyprus.
Remember, that you can still watch many of the sessions from our 2021 Convention on our Facebook page here and YouTube channel here. If you are interested in helping us add subtitles in your native language, please let us know by contacting zoe@lupus-europe.org.
I hope you will all have a happy and healthy 2022 and that we can all help each other improve the lives of all people with lupus in Europe and their family and friends. Looking forward to seeing you all “in real life” and/or behind the screens in the next year.
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On behalf of the Board of Directors,
Jeanette Andersen
Chair of Lupus Europe
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what do the acronyms mean
[1] FDA: The Food and Drug Administration is responsible for the approval of new treatments, vaccines etc. in the United States.
[2] EMA: The European Medicines Agency is responsible for the approval of new treatments, vaccines etc. in Europe.
[3] EFPIA: The European Federation of Pharmaceutical Industries and Associations (EFPIA) represents the biopharmaceutical industry operating in Europe.
[4] GlobalSkin Europe: The International Alliance of Dermatology Patient Organizations in Europe.
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LE Webinar get to know us!
a general INTRODUCTION to Lupus Europe
and how to VOLUNTEER for Lupus Europe
Get to know us on February 2nd, at 20:00 CET (i.e. Paris Time)
– please register first by e-mail to zoe@lupus-europe.org.
Come along to find out about all the different volunteering possibilities we have at Lupus Europe and to learn more about the incredible work our volunteers do! Don’t miss this exciting webinar!
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Rare Disease Day
February 28th 2022
Save the date!
Did you know lupus is a rare disease in Europe? The definition of rare is different in each country, but in Europe a disease is classed as rare when it affects less than 1 in 2000 people.
Rare Disease Day is a globally-coordinated, patient-led movement on rare diseases working towards equity in social opportunity, healthcare, access to diagnosis and treatment for everyone living with a rare disease.
find out more about RRD here
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LE Survey Centre
Do you know we have a survey centre on our website?
There is still so much to learn about lupus in Europe. One of the ways to learn new things is through surveys. Some surveys are organised by Lupus Europe, others by the European Reference Networks, our partners, academics or other member groups.
To help you contribute and be heard, we have created a survey centre on our website where we have assembled some of the surveys currently available. We regularly update the surveys on our survey centre.
The survey centre is under “News Centre” on the main page of the Lupus Europe website. You can also find it by using the direct link here
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Klaudia Kępa presentation
get to know what a Co-Opt to the Board does
What is being a Co-Opt to the Board of Lupus Europe like?
Watch Klaudia Kępa talk about her experience as a Co-Opt to the Board of Lupus Europe and the positive impact it has had on her life.
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Dalila Tremarias bio
get to know a member of your Patient Advisory Network
and the newest Co-Opt to the Lupus Europe Board
Dalila lives in Cardiff, Wales. Since very young she had great interest in medicine. Her SLE diagnosis as a child increased her admiration for the healthcare service even more. After several flares, she graduated with a BA in Modern Languages and further studies in International Business that allowed her to travel and do business around the world.
Her lupus symptoms became more debilitating, later she was diagnosed with lupus nephritis, so she decided to put down roots in Cardiff and work as a legal translator.
She took her first steps in research when she was living in England, where she was treated by lupus experts. Those experts helped her to understand more about lupus and how to manage it. Through this journey she also learnt about the vital role that lupus patients have in research and how today’s involvement in research could shape and improve tomorrow’s lupus treatment and care.
In those 20 years since initial diagnosis, Dalila has been able to experience the positive impact that a support network can have on the quality of life and mental health of those with lupus. It is of great importance for her that lupus patients receive mental health support and that it becomes part of their care and lupus journey. She runs a local support group for Lupus UK and invites those in the area to join their meetings and awareness events.
She is highly committed to research and volunteers as a PAN member for Lupus Europe. She is also a lay reviewer for Health and Care Research Wales, NIHR, different universities, and charities across the UK. As a new co-opt member to the Lupus Europe board, she is looking forward to learning and collaborating with research projects in Europe.
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Dalila Tremarias
Member oh the Lupus Europe
Patient Advisory Network
and the new Co-Opt Member to the Lupus Europe Board
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Why is Lupus Europe part
of the EFPIA Patient Think Tank?
There is a statistic we use in lupus: there has only been one new medicine approved for lupus treatment in the last 50 years. But it’s not because the need isn’t there: lupus is just a very complex disease with many different faces, and so far, has eluded serious treatment success. Given that, one of our three strategic goals is to ensure that people with lupus participate in and benefit from lupus research. As a key step towards fulfilling this strategic goal, Lupus Europe has over the past 10 years formalised and increased its work with individual pharmaceutical companies.
Because lupus is such a complex and often misunderstood disease, Lupus Europe´s role is to be a mouthpiece for lupus patients in the scientific community; and provides posters and presentations for key scientific lupus events. So when Lupus Europe was invited to become part of the EFPIA Patient Think Tank we felt this was another path towards getting our message to the people who need to hear it.
EFPIA is the European Federation of Pharmaceutical Industries and Associations, grouping essentially all of the pharmaceutical stakeholders in Europe. The Patient Think Tank, or PTT, is the patient organisation branch of EFPIA. Anne Charlet has been invited to be a Board Member of the PTT. Amy Somers will be replacing her on the PTT. These positions involve 6-10 meetings per year.
Lupus Europe feels that its messages are not only lupus-specific but can be relevant for many patient communities. By taking part in the in PTT with the other umbrella patient organisations, Lupus Europe adds its voice to the patient choir. There is strength in numbers, and we can work together on the topics that are common to all disease areas. An example of a lupus-specific issue that our community has had to deal with during COVID is the shortage of hydroxychloroquine, the most prevalent drug used by lupus patients to avoid flares. But availability of vital medication during a pandemic is a critical supply chain issue that will have to be examined by all, for all.
As a member of the PTT, we can give our lupus patient perspective to pharmaceutical projects, early on, and hopefully influence and direct R&D (research and development) to meet real patient needs. As the end consumers of the pharmaceutical products, patients’ input as to how their products turn out should be taken into consideration early on. But within the EFPIA PTT, we reach not only those pharmaceutical companies that may be actively working on lupus, but all EFPIA PTT members, which underlines our principle that the best results come out of collaboration between patients, the pharmaceutical industry, and physicians. The EFPIA PTT is just one forum where we’ll continue to communicate our messages and needs until the day we no longer need to.
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Anne Charlet
Vice Chair of Lupus Europe
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GlobalSkin
The International Alliance of Dermatology Patient Organisations
The International Alliance of Dermatology Patient Organisations (also known as GlobalSkin) is a global alliance, committed to improving the lives of patients affected by skin diseases around the world. GlobalSkin’s work is founded on three pillars: research, advocacy and support. GlobalSkin is in the process creating GlobalSkin Europe. GlobalSkin Europe is not a separate entity; it is part of GlobalSkin, but entirely focused on Europe.
The importance of skin conditions and the serious impact they can have on patients’ lives are often underappreciated and overlooked. There is also a stigma attached to skin disorders. GlobalSkin Europe supports European patient organisations on building organisational capacity, supporting member recruitment and advancing advocacy goals. GlobalSkin Europe’s goals are to raise awareness of and bring attention to skin conditions, work to break the stigma so often attached to skin disorders and ensure skin issues are on the EU’s agenda.
Lupus Europe Secretary Annemarie Sluijmers is part of this effort and is a member of the Advisory Board of GlobalSkin Europe. The advisory board of GlobalSkin Europe meets every couple of months and has ad hoc meetings as necessary as they focus on building the structure of this emerging organisation.
The RareDERM Community is part of GlobalSkin as well. RareDERM is a global community for people living with rare/uncommon dermatological conditions. Annemarie is also part of the RareDERM advisory committee. The RareDERM advisory committee has quarterly meetings and their work is focused on improving linkages for patient organization leaders, building capacity and coordination of a synchronized strategic approach to improve access to care, stimulating critical research; disseminating critical information and improving treatment options for patients living with neglected, rare or uncommon skin diseases.
Skin lupus and SLE with skin manifestations are a focus of GlobalSKin and GlobalSkin Europe too. We need to bring attention to skin lupus and SLE with skin manifestations and we need more research and better treatment options for this area of lupus. Sometimes with lupus the biggest organ of our body, our skin, can be a bit ‘forgotten’. As a member of the Advisory Board of GlobalSkin Europe and the RareDERM Advisory Committee, Annemarie is working hard to put lupus-related skin issues on the agenda and to increase awareness and understanding of skin lupus and skin issues linked to SLE.
Lupus Europe is also one of the founding partners in the Global Dermatology Coalition, a coalition of stakeholders brought together by GlobalSkin. This informal, multi-stakeholder coalition is between independent organizations, societies, groups, networks, institutions and companies. It is a patient-led coalition with GlobalSkin as coordinator. The first Founding Meeting of the coalition was on January 19th and Annemarie Sluijmers attended as a representative of Lupus Europe.
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LE Kick Lupus 2021
ChrysoYiasoumi, the 2021 winner competition
This past year was 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 this past summer we ran the Kick Lupus 2021 Competition – My Covid19 Lupus Hero!
The Kick Lupus 2021 Competition focused on recognising others who offered support to a person living with lupus in Europe through the Covid19 pandemic. Many nominations were received from all around Europe and it was truly heartening to see the different practical, emotional and creative ways others supported those people with lupus who took part in the competition throughout the pandemic. A panel of judges was convened. After careful consideration of all submissions, the panel unanimously decided the nomination submitted by Chryso Yiasoumi was to be the winner of the Kick Lupus 2021 Competition – My Covid19 Lupus Hero!
Chryso nominated her daughter, Irini, as her Covid19 Lupus Hero. In her submission Chryso talked about how Irini helped with everything Chryso needed throughout the lockdown. Irini was the go-to person for food shopping, picking up prescriptions, going on dog walks and was also there to offer emotional support.
Chryso was presented with a Kick Lupus 2021 Competition Award during the Lupus Europe 2021 Convention. As the winner of the Kick Lupus 2021 Competition, Chryso and Irini will both be invited to the Lupus Europe 2022 Convention which we hope will be held in Bratislava.
to read Chryso’s original submissionce click here
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LE Board Meeting
Leuven, Belgium, 26-28th November 2021
The Board and extended Board of Lupus Europe met from November 26th to November 28th 2021, in Leuven for three very interesting and productive days of work!
Most Board and extended Board members met in Leuven in person, while Jeanette and Zoe followed the meetings online. The Board worked very hard all weekend; ideas were generated, discussions were had and key decisions were made as a result!
We had a strict agenda, guided by our Strategic Plan for 2018-2023. We discussed the Lupus Europe Convention 2022 (more news on that to come soon), reviewed our Strategic Plan for 2018-2023 and discussed concretely our goals, strategic objectives, and priorities for 2022. We went over exciting new projects that are in the pipeline, made plans for communications in 2022 including our web presence, had extensive discussions on enhancing and growing our Lupus Europe volunteer programme, discussed applications to our capacity building programme, talked about plans to invigorate the PAN in the coming year and organised upcoming meetings with our partners and trainings for the year. The Board also discussed the budget of Lupus Europe.
It was a weekend full of productive meetings with important decisions on doing even more for people with lupus across Europe!
Annemarie is running the Members Chat and is contacting members to check up on how everyone is doing. Zoe is running the National Member News blog series and is also contacting members. So don’t be surprised if you get an e-mail from one of us asking to chat!
Do contact any of the board members if you’re interested in applying to become a Board member or, perhaps to start with, a Co-Opt to the Board.
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Jeanette Andersen,
Zoe Karakikla-Mitsakou,
Alain Cornet, Klaudia Kępa,
Aldevina Sturiene, Anne Charlet, Amy Somers and Annemarie
Sluijmers
to know more about the members here
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