Here we are, mid-summer, nature blooming and glooming, in some areas with too much rain, in other areas too high temperature. As nature changes, the Covid-19 virus also changes, another variant is disrupting planned face to face events.
From our safe home environment we continue working on a world without lupus (and a safer world with less Covid-19 cases), hoping to safely be able to have face to face meetings in the future.
Due to an increase in Delta variant cases, we decided the safest way forward was to convert what we had hoped would have been an in-person Board Meeting, to a series of virtual Board Meetings during the weekend of July 24th – 25th.
The European Lupus Community is still very active! Lupus Poland had their first meeting with their board and (prospective) volunteers/members in Gdańsk.
As Lupus patients luckily get older, the set of problems they face changes. To discuss this, a Patient Panel “Senior with Lupus” will be held in November this year.
We have been attending various online meetings. Klaudia and Annemarie both attended Eurordis Summer School 2021, getting their certificate afterwards.
As in some member states there is a lack of sufficient brochures, we are translating various (lupus) brochures in different languages, to be made available for our members.
For our Patient Advisory Network (PAN) we have hired a PAN coordinator, Helen Burchmore, who will introduce herself in this newsletter. We are all very excited to be working with her! The first meeting of the PAN has been taken place in which all PAN members and the PAN Coordinator were introduced to each other.
Unfortunately, due to the Delta variant, and the lack of reassuring news on the efficacy of vaccination amongst people taking immuno-suppressive treatments we have made the difficult decision to re-frame our Convention, that we were hoping could be held in person in Bratislava from September 23rd to September 26th, into a Virtual event. Our virtual Convention will be held on the same dates, so save the date!
We will meet again, someday, meanwhile we look forward to better times soon where we will be able to meet again face to face.
“We have always held to the hope, the belief, the conviction
that there is a better life, a better world, beyond the horizon.”
Franklin D. Roosevelt
Annemarie Sluijmers LUPUS EUROPE Secretary
what is coming!
LE Convention 2021
In June, we announced the 32nd Annual LUPUS EUROPE CONVENTION 2021 that was due to be held in Bratislava, Slovakia from the 23rd to the 26th of September. Unfortunately, the Delta variant, and the lack of reassuring news on the efficacy of vaccination amongst people taking high dose immuno-suppressive treatments (incl. Rituximab and MMF) is creating concerns that September might be too early for a LUPUS EUROPE face to face event. Talking with some of you, our members, we all realised that while most would like to join face-to-face, very few would actually come if the situation in September was identical to what we experience today.
In light of this situation, we have made the decision to re-frame our Convention this year again into a virtual event. The Convention will be from the 24th to the 26th of September, but we will meet you wherever you are this year! We do realise this is a major disappointment for many, but in the current context, we do not want to make concessions on safety, which must come first.
This is a unique opportunity for abroad European Lupus Exchange, where people share thoughts on topics that interest them most. A few weeks ago, we asked you to take part in a survey to let us know what topics you would most like to see discussed in the Convention! Your enthusiastic contributions allowed us to design a truly exciting Convention programme.
Our Convention is primarly aimed at our members and active volunteers. As the online nature of the event allows more participation, this year we can once again welcome a broader audience.
In 2020 Lupus Europe started a special project for its national members: the Capacity Building Project.
This project’s aim is to help our National Members by funding projects for which they need extra funding. To be eligible, projects should be in the future (so should not have started or taken place already) and should have the intention to improve, maintain, etc. contact with the members of your National group, examples are:
to give better information on lupus to your members by translatingleaflets, brochures in your own language
to organise (online or in person) events for your members, but cannot due to shortage of funds
to create or have a big upgrade of your website or digital presence
So, if your organisation needs additional funding, please do send us an email to let us know about your project and apply for funding. The Lupus Europe Board of Directors will then review the application and decide whether it will be granted.
Do you know we have an exercise programme for lupus patients on our website?
Exercise is so incredibly important for both physical and mental health.
At LUPUS EUROPE we collaborated with trained physical therapists to develop an exercise programme in 5 levels. Our exercise programme has been endorsed by several leading European lupus specialists and is also endorsed by ERN ReCONNET and recommended by EULAR!
All exercises in each of the five levels of our programme can be done without any special training tools. Each of the five levels of the programme can be done in 15-20’ if you do 2-3 rounds!
World Arthritis Day (WAD) is a global awareness day for arthritis that takes place every year on 12 October. The aim of World Arthritis Day is to raise awareness of rheumatic and musculoskeletal diseases (RMDs), including lupus. There are more than 200 RMDs and their effects can be debilitating; raising awareness of the existence and impact of RMDs is crucial.
Helen lives in Devon, a wonderfully green (and wet!) part of the UK.
In 2005 she was diagnosed with multiple sclerosis (MS). She was lucky to find a clinical trial run by a team who were very supportive and encouraged her to become a passionate Patient Advocate.
She currently works with the MS Society Patient Network and sits on the MS Registry Executive Board. Helen became a EUPATI Fellow in 2016.
Having worked for the ‘research arm’ of the UK national health service for many years, she understands about the importance of creating an environment where patients can work with clinicians, researchers, industry and regulators to bring the reality of living life with a chronic condition to the foreground.
Working closely with a colleague living with lupus was a spur to wanting to help people with this complex condition to be heard and involved in designing early research and setting research agendas across the EU.
She very much looks forward to getting to know the Patient Advocacy Network and supporting their drive for better healthcare for those living with lupus.
Name Helen Burchmore
Diagnosis Multiple Sclerosis (MS)
Date of Diagnosis August 2005
Period of treatment for MS under clinical trial October 2006 & 2007 LinkedInhere
we are RECRUITING volunteers
Patient Advisory Network
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 (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?
Applicants should meet the following criterions:  Be at least 60 years old,
and have lived with lupus for at least 20 years  Live in Europe  Be able to interact with others in English
(no need to be an English expert!)  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.
Do you want to join the team and collaborate with us on this project?
We have established an exciting new project! We will translate five brochures on various topics connected to Lupus into 16 European languages.
Our aim is to empower the patient organisations for people living with lupus in Europe by making reliable information more accessible.
The brochures will provide updated information on some of the most important aspects of the condition and they will help patients receive the necessary facts regarding their diagnosis and management of the disease.
The five chosen brochures, created by Lupus UK (source), are focusing on (1) Lupus and pregnancy, (2) fatigue and your lifestyle, (3) symptoms and diagnosis, (4) joints and muscles, and (5) skin and hair.
We are in the process of organizing a focus group with several patient representatives (PAN involvement) in order to ensure the completeness of the information. We will then add to the brochures answers to any additional questions those patient representatives, who are people living with lupus, might have.
Moreover, the brochures will be updated with the most recent information from studies and articles, and they will be validated by doctors. The translated brochures will then be disseminated among Lupus Europe Member Organisations.
In the near future, we are also planning to develop a new brochure to increase the awareness, education and access of people living with lupus on research and clinical trials. We will keep you updated on our progress, so stay tuned.
The Board of Lupus Europe met on Zoom for a series of very interesting and productive meetings on the 24th and the 25th of July. The Board worked very hard all weekend; ideas were generated, discussions were had and key decisions were made as a result!
The agenda for the meeting was strict and guided by our Strategic Plan for 2018-2023.
There was a general consensus that we need to build on the wonderful work we have done with surveys so far, in order to engage more people with lupus around Europe in future surveys. We discussed the launch of a new Lupus Europe project, focused at translating five brochures on lupus created by Lupus UK into a number of European languages. The project lead is Klaudia; if you would like to volunteer for this project just let us know!
A lot of attention was given and time spent discussing the upcoming Lupus Europe Annual Convention that we were all hoping would be in Bratislava this September. The Board made the very difficult decision to re-frame the Convention into a virtual event again this year. Safety must come first and a virtual Convention allows for an exciting programme, whilst ensuring everyone‘s safety.
The Board also had detailed discussions on the budget of Lupus Europe and a lot of progress was made in addressing all the budgetary points that needed to be tackled.
Zoe Karakikla-Mitsakou, Jeanette Andersen, Amy Somers, Anne Charlet, Klaudia Kępa, Aldevina Sturiene, Annemarie Sluijmers, Elfriede Wijsma, Alain Cornet and Helen Burchmore
to know more about the members here
EULAR Congress 2021
Our Top Takeaways
Every year, thousands of rheumatologists, health care professionals, researchers and patients meet at the European Alliance of Associations for Rheumatology (EULAR) Congress! EULAR 2021 was held online from the 2nd to the 5th of June. It was an incredible Congress, with lots of interesting sessions and so many things to learn!
The LUPUS EUROPE Board and several of our PAN members attended EULAR 2021 and watched the sessions with great interest! We wanted to take this opportunity to share with you all our top takeaways from EULAR 2021.
A few members of our Board and PAN have made their own, separate “Top Takeaways from EULAR 2021” slides so they could share what they learned with all and which sessions they would put in their “Top Three” or “Top Ten”!
to read our Top Takeaways from EULAR 2021
go to our websitehere
Inaugural F2F Meeting
in Gdańsk on June 2021
First of all I would like to say a huge “thank you” to Lupus Europe for supporting us financially with the organisation of this meeting. It went great and both the patients and us, the board of Lupus Poland, really needed it to meet in real life – most of us had never met before outside of the online reality.
The meeting of Lupus Poland was organised on the 27th of June 2021 in Gdańsk and it was a result of the need expressed on one of our groups on Facebook by a person living with lupus. We, Lupus Poland, have taken this opportunity and organised it, in order to connect everybody and to create a network of patients, who can support each other – find out all about it here.
Welcome to Lupus Europe. To join our pan-European community, please contact us.
LUPUS EUROPEUniting people with Lupus throughout Europe
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