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Dear Members and Friends,
Winter is finishing and spring is on it´s way. We feel the energy of the sun getting stronger (remember UV-protection!) and the excitement in Lupus Europe going up as we get closer to our Annual Convention.
We also felt a boost of energy when we had the combined youth- and senior- patient panels in Barcelona in the beginning of February. Whenever lupus patients are brought together magic things start to happen. Ideas for new projects and new ways of working were flying through the air and provided SO much inspiration for everyone. We are really looking forward to seeing the results of the new Lupus Europe Youth Group in the future. Thank you to all seniors and juniors who joined!
At the Annual EULAR Congress in Milan, we are hoping to hear new and exciting research results in the area of lupus. Be sure to keep an eye out for news or even better – join us in Milan and register through the link!
From April 20th to April 22nd the first ever ERN ReCONNET International Congress on rare and low-prevalence connective tissue diseases will take place in Brussels, Belgium. Lupus Europe will be present representing the patient voice in collaboration with ePAGs from other disease areas. You can learn more about the ERN and ePAGs in our “Discover a Lupus Europe Partner” article.
Our Annual Kick Lupus Competition was all about volunteering this year. We had a number of great entries from across Europe on the topic of “how has volunteering for a lupus organisation helped change my life?”. A panel of judges has found a winner for the Competition, a very difficult task with such fantastic entries this year! Thank you to all entrants for their submissions and we look forward to announcing the winner of the Kick Lupus Competition 2023 at our Annual Convention.
I hope you enjoy our little newsletter and don´t forget to keep an eye on our social media channels and website for other relevant news and updates on everything lupus related.
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Energising spring wishes to you all,
on behalf of the Board of Directors,
Jeanette Andersen
Chair of Lupus Europe
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what do the ACRONYMS mean
APs | Affiliated Partners
AP | Antiphospholipid Syndrome | info
EDS | Ehlers-Danlos Syndromes
EFPIA | European Federation of Pharmaceutical Industries and Associations | website
EMA | European Medicines Agency | website
ePAGs | european Patient Advocacy Group (patient representatives)
ERN | European Reference Network | website
ERN ReCONNET | ERN on Connective Tissue and Musculoskeletal Diseases | website
EULAR | European Alliance of Associations for Rheumatology | website
EURORDIS | Rare Diseases Europe | website
FDA | Food and Drug Administration, United States of America | website
GlobalSkin | International Alliance of Dermatology Patient Organizations | website
HCPs | HealthCare Professionals
HcQ | Hydroxychloroquine | info
HTA | Health Technology Assessment
IgG4 | IgG4-related diseases
IIM | Idiopathic Inflammatory Myopathies
PAN | Patient Advisory Network | info
MCTD | Mixed Connective Tissue Diseases
rCTDs | rare and complex Connective Tissue and Musculoskeletal Diseases
RMDs | Rheumatic and Musculoskeletal Diseases
RP | Relapsing Polychondritis
SLE | Systemic Lupus Erythematosus | info
SS | Sjögren’s Syndrome
SSc | Systemic SClerosis
UCTD | Undifferentiated Connective Tissue Diseases
WLD | World Lupus Day | website
WLF | World Lupus Federation | website
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2nd PATIENT PANEL ON YOUTH
Barcelona | February 2023
On February 3-5 LUPUS EUROPE organised its second Patient Panel on Youth, bringing together 10 young people from all over Europe to share their experience of living with lupus. A young rheumatologist who regularly works with people living with lupus also joined the Patient Panel as an active participant; this gave the young doctor the unique experience of participating in discussions with young patients, hearing their views, dreams, and concerns, and she was also able to share her very valuable thoughts and points of view from her experience as a doctor. The Youth Panel was conducted through a series of interactive presentations, team discussions and workshops. From Friday afternoon to Sunday lunch, we addressed the key issues young participants identified in their life with lupus and explored the possibility of creating a Lupus Europe youth group.
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KEY LEARNINGS
Young people would like information about lupus to be adapted and be in a format they can relate to. This generation of young people are a ‘tech generation’ and information formats patient associations use are not attractive or relatable to them. This creates a very real barrier to them accessing information about lupus.
Transition from paediatric to adult rheumatology services had been experienced by many participants as difficult, disjointed, and traumatic. Paediatric services ‘felt like home’ for a lot of young people with a lot of them feeling safe and comfortable with a familiar team of professionals. Transition was coloured by lack of communication between departments and a significant lack of patient education to young people who need to learn how to manage all the aspects of a complex, chronic disease like lupus by themselves for the first time as they become young adults.
Despite significant differences in specialised lupus care across different regions and countries in Europe, young people all had access to lupus specialists and access to treatment. However, there was a significant gap in peer support, psychological support and also in information young people said they need (i.e. on having lupus and going to university, starting work, travelling).
For many of the young people present, attending the Patient Panel was the first time they had met other young people with lupus. Participants were enthusiastic and committed to the idea of creating a Lupus Europe Youth Group, that could serve as a central point to connect young people with lupus across Europe!
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Senior Patient Panel +60
Barcelona | February 2023
I was fortunate to attend the lupus senior patient panel at the lovely Hotel Constanza in Barcelona.
Alain Cornet was hosting our group of six and he had an inventive way of how to introduce ourselves with food representing our life. We continued to create timelines about our lives with lupus which we then presented and recorded.
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The following day we categorised our lupus and talked about our symptoms and concerns. We realised that although our diseases were all different physically we agreed on many aspects of treatment and lifestyle.
An interesting talked followed by Prof Ricard Cervera who updated us on new drugs and criteria for disease diagnosis.
We finished the final day by talking about the success of Hydroxychloroquine and other drugs and side effects. Alain threw in a few questions to think about including how to create awareness for lupus using positivity not negativity.
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The conference finished with an amazing lunch and we went our separate ways. The hospitality shown by the panel was amazing with two lovely meals at restaurants and plenty of snacks.
The experience of meeting other lupus patients from Europe was invaluable and we have all swapped contact details so we can continue our lupus journey together.
a testimonial by Cherry a senior panel participant
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KICK LUPUS
Competition 2023
by Lupus Europe
Our Kick Lupus 2023 Competition was all about volunteering this year! People from across Europe have sent us their testimonials on “How has volunteering for a lupus organisation helped changed my life?”. We would like to take this opportunity to thank all participants for their submissions to the contest and for sharing with us their testimonials.
The winner of the Kick Lupus Competition 2023 will be formally announced at our upcoming Convention in Lisbon in April.
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LUPUS EUROPE
CONVENTION 2023
is coming up in APRIL
In December 2022 we announced the 34th Annual Lupus Europe Convention 2023 was due to be held in Lisbon, Portugal from April 28th to May 1st 2023.
We have created an exciting Convention programme for this year! The theme of our Convention will be Volunteering. Lupus organisations in Europe are patient-led and volunteer based; volunteers are the life force of our organisations. Being a volunteer can be incredibly rewarding, can enhance skills and create a sense of being part of a family of like- minded individuals working together for a common purpose.
This last year, leaders of national lupus groups across Europe and Lupus Europe have come together in a vibrant and energetic volunteering working group to discuss how volunteering works for different European organisations, to find common ground on best practices across organisations and to look for creative solutions on a topic that concerns us all! As organisations, we are always stronger when we stand together.
Our Convention is aimed at our members and active volunteers. As in previous years our Convention will have a very small virtual component as well, allowing friends who are not able to travel to Lisbon to access some limited parts of the Convention. This will also allow us to welcome a broader audience once again for some parts of our Convention.
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EULAR 2023
European Congress of Rheumatology
Milan | May 31 – June 3
From May 31 to June 3 the Annual EULAR Congress will take place in Milan, Italy. This year the Congress will be for onsite attendees only. By joining you can learn about the latest scientific research within rheumatic and musculoskeletal diseases (RMDs) which also covers lupus. Registrations are open just click bellow!
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patients and family members 25€
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ERN ReCONNET
a Lupus Europe partner organisation
The European Reference Networks (ERN) consists of 24 different networks of rare diseases and was established by the European Commission to create a European-wide infrastructure that goes beyond geographical boundaries where HCPs and other stakeholders can connect and share expertise and discuss needs.
The ERN called ReCONNET is a network for rare and complex connective tissue and musculoskeletaldiseases (rCTDs). Here rCTD specialists and patient representatives (ePAGs) collaborate on an equal level, discussing rare cases and identifying which direction or action to take and coming up with new research projects and supporting ongoing ones.
ERN ReCONNET currently involves 64 Healthcare Providers: 55 Full Members and 9 Affiliated Partners (APs) over 23 European countries [1] and cover the following disease areas: Antiphospholipid syndrome (APS), Ehlers-Danlos syndromes (EDS), Idiopathic inflammatory myopathies (IIM), IgG4-related diseases (IgG4), Mixed connective tissue diseases (MCTD), Relapsing polychondritis (RP), Sjögren’s syndrome (SS), Systemic lupus erythematosus (SLE),
Systemic sclerosis (SSc) and Undifferentiated connective tissue diseases (UCTD).
Lupus Europe has two ePAGs, who run the SLE working group alongside two disease Coordinators (Dr. Maarten Limper and Prof. Laurent Arnaud). We also have a representative in the ERN ReCONNET Steering Committee as well as several working groups ( e.g. Registries and e-health and Research and Quality of Care). You can read more about ERN ReCONNET on their website here and don´t hesitate to reach out to us if you would like to learn more about our collaboration.
by Jeanette Andersen Chair of Lupus Europe
ePAG and Steering Committee Member in ERN ReCONNET
[1] Austria, Belgium, Croatia, Czech Republic, Denmark, Estonia, Finland, France, Germany, Greece, Hungary, Italy, Latvia, Lithuania, Luxembourg, Malta, Poland, Portugal, Romania, Slovenia, Spain, Sweden, and The Netherlands.
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LUPUS EUROPE YOUTUBE Channel
have you checked our YouTube channel?
We have a very active YouTube channel with a number of different playlists. Visit our YouTube channel and discover Lupus Europe Webinars, Volunteer Testimonials, select sessions from our most recent Lupus Europe Conventions, videos of an exercise programme for lupus patients, interviews of doctors from the European Lupus Meeting 2022 and much more!
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