As summer envelops us in warmth and optimism, we bring you exciting updates from Lupus Europe. With a burst of summer energy, we continue to work towards empowering and supporting the lupus community across Europe.
Join us on Thursday, October 28th at 20:00 CET (Brussels time) for the Lupus Europe Digital Health webinar and enter the fascinating world of digital health with us. Register by sending an e-mail to firstname.lastname@example.org.
The Lupus Europe Youth Group is organising a meet up this October in Leuven, Belgium. If you’re between 18-35, have lupus, and want to connect with others, apply to join now by sending an e-mail to email@example.com.
EULAR Congress 2023 was a resounding success for Lupus Europe. Lupus Europe submitted six abstracts at EULAR Congress 2023. Five of these abstracts were accepted with two selected for oral presentation, including the acclaimed “Lupus Europe’s Patient Advisory Network – A Huge Double Success.” The main author, Alain Cornet, was honoured with the prestigious PARE Best Abstract Award. One of the resounding successes was the spotlight on the Lupus100 project. The abstract “Lupus100.org – A Step Change in Access to Quality Information for European Lupus Patients” was chosen for an oral presentation in the Opening Abstract Plenary Session of the scientific programme! Lupus Europe had many more successes at the EULAR Congress 2023 with none bigger than the dedication and tireless work of PAN members on the ground.
Do watch the joint Lupus Europe / ERN ReCONNET webinar on “EULAR 2023 Debrief – for people living with lupus” to learn more about Lupus Europe successes at the EULAR Congress 2023, to hear first-hand from PAN members who took part in the Congress, but also to discover more about the ground-breaking presentations and initiatives that made EULAR 2023 an extraordinary success.
As part of a larger project to streamline and improve our communication with you all, we have launched two additional, new e-mail addresses; one for any PAN-related questions and one for financial queries. All our usual e-mails still work as well!
Lupus Europe had its Annual Convention in Lisbon this year, from the 28th of April to the 1st of May. The Convention was preceded by a PAN meeting. The theme of this year’s Convention was “Volunteering”. Read the newsletter to find out more about the Convention and to stay connected with Lupus Europe for more exciting news and updates.
Wishing you a joyous summer!
On behalf of the Board of Directors, Jeanette Andersen
Chair of Lupus Europe
What do the acronyms mean: ERN ReCONNET: European Reference Network on Connective Tissue and Musculoskeletal Diseases EULAR: European Alliance of Associations for Rheumatology EULAR Congress: European Alliance of Associations for Rheumatology Congress PAN: Patient Advisory Network
What is coming!
LE Webinar – Digital Health
Thursday, October 28th at 20:00 CET (Brussels time)
Discover the future of healthcare at the upcoming Lupus Europe Digital Health Webinar! Join us on Thursday, October 28th at 20:00 CET (Brussels time) as we explore the fascinating world of digital health with renowned speaker, Dr. Philipp Bosch.
Lupus Europe Youth Group
Working as a volunteer for a group that focuses on young patients should be a fulfilling experience, right? As a volunteer myself I can assure you it’s so much more!
A youth group, and specifically Lupus Europe Youth Group gives the opportunity to young adults not only to join, but also to take initiatives to make a change. Not only do we have a strong voice, but we are always encouraged to use it as frequently as we can. Even small suggestions that might appear minor or even insignificant have the potential to grow into something huge.
The goals, the visions, and the hope that we develop during our meetings for a better future for our fellow patients, is something that I frankly never thought would have such a positive impact on me. If I had to think of something that would help better our group, the only thing that would come to my mind would be its enlargement. That way more voices, ideas and motivation would join our small group to hopefully make a not so small impact.
By Marina Pietri, Lupus Europe Youth Group Member
Lupus Europe Youth Group Meet Up October 20 to October 22, in Leuven (Belgium)
Lupus Europe is organising a Meet Up of the Lupus Europe Youth Group! This event will take place from October 20 to October 22, in Leuven (Belgium).
There are a few remaining spots available for new members to join:
Do you have lupus?
Do you live in geographical Europe?
Are you between 18-35 years old?
Do you speak English?
Do you want to connect with other young people with lupus?
Are you interested in volunteering?
Send us an e-mail, telling us your reasons for wanting to take part, and be selected to join other young people from all around Europe at an exciting meet up! You will have the opportunity to exchange ideas, make new friends and have some fun! The Lupus Europe Youth Group is made for young people with lupus by young people with lupus. No outsiders, just us.
All reasonable costs (travel and stay) will be paid by Lupus Europe. The language will be English, but don’t worry, most participants are not native speakers!
Apply now by sending an e-mail to firstname.lastname@example.org
Did you watch the joint Lupus Europe ERN ReCONNET webinar on “EULAR 2023 Debrief – for people living with lupus”
Watch it now at: https://youtu.be/2vBISe63b7o
EULAR 2023: A Resounding Success for Lupus Europe and the Patient Advisory Network (PAN)!
The European Alliance of Associations for Rheumatology (EULAR) Congress 2023 was a very successful event for Lupus Europe and its Patient Advisory Network (PAN) members. With unwavering dedication and hard work, PAN members showed their commitment to supporting the lupus community across Europe.
Alain Cornet Wins PARE Best Abstract Award:
Lupus Europe submitted six abstracts at EULAR Congress 2023. Five of these abstracts were accepted with two selected for oral presentation, including the acclaimed “Lupus Europe’s Patient Advisory Network – A Huge Double Success.” The main author, Alain Cornett, was honoured with the prestigious PARE Best Abstract Award.
The oral presentation was skilfully delivered by PAN member and Board member, Amy Somers.
Empowering Patients through Lupus100.org:
One of the resounding successes was the spotlight on the Lupus100 project. The abstract “Lupus100.org – A Step Change in Access to Quality Information for European Lupus Patients” was chosen for an oral presentation in the Opening Abstract Plenary Session of the scientific programme!
The oral presentation was delivered by Zoe Karakikla-Mitsakou. This acknowledgement in the scientific programme underscores the importance of the Lupus100 project in providing valid and easy to understand information about lupus in, currently, more than 80% of the native languages of the European population so lupus patients can access valid information about lupus in their own language.
The potential of Lupus100 as a tool for patients, but also for doctors was highlighted by Francesca Marchiori (PAN member), Lena Koskina (PAN member) and Alain Cornet through “Lupus100.org a new tool for doctors to build patients lupus knowledge and fight poor quality web information” in the scientific poster tour.
Exploring Crucial Aspects of Lupus:
Alain Cornet’s poster tour presentation “Patient-doctor communication gap – Results of a speed-shop on “lupus flare” at Lupus2022 meetings” highlighted the difference between physicians’ and patients’ definition of a lupus flare.
Dalila Tremaria’s (PAN member and Board Member) scientific poster presentation on the “Association between diagnosis delay and disease activity with burden of the disease in 4150 European patients with Systemic Lupus Erythematosus” put a spotlight on the association between diagnosis delay and self-perceived disease activity with the burden of the disease on the daily life of people living with lupus.
Furthermore, Jeanette Andersen (Lupus Europe Chair) shared her inspirational journey to the specialists of her rheumatic disease in a captivating fishbowl session! The abstract “Recommendations on handling medicine shortage: learning from Hydroxychloroquine 2020 crisis for SLE patients” was also accepted for publication.
Enthusiastic Presence at the Lupus Europe Booth:
The Lupus Europe booth was a hub of energy and enthusiasm, thanks to the devoted PAN members who tirelessly manned the booth. Their passion for spreading awareness about Lupus Europe, the Lupus100 project and many other Lupus Europe projects was clear to all those who passed by.
Lupus Europe invites you to watch the joint Lupus Europe / ERN ReCONNET webinar on “EULAR 2023 Debrief – for people living with lupus”. Watch the webinar to learn more about Lupus Europe successes at EULAR Congress 2023, hear first-hand from PAN members who took part in the Congress, but also to discover more about the ground-breaking presentations and initiatives that made EULAR 2023 an extraordinary success.
Watch Aldevina Sturiene talk about her volunteering experience with Lupus Europe, the work she does as a Board Member and her reasons behind volunteering: https://youtu.be/hmNdHP91_RU
What is happening:
Streamlining Communication with New e-mails
We’re thrilled to announce the launch of two additional, new e-mail addresses, as part of a project to streamline and further improve our communication.
For any PAN related enquiries, please reach out to us at: email@example.com. For financial matters, you can now reach us at: firstname.lastname@example.org.
Rest assured, you can also still get in touch with us through all usual e-mails!
Happened last quarter:
Lupus Europe Convention 2023
The Lupus Europe Annual Convention 2023 took place in Lisbon from April 28 to May 1, 2023. The theme of this year’s Annual Convention was “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.
Welcome to Lupus Europe. To join our pan-European community, please contact us.
LUPUS EUROPEUniting people with Lupus throughout Europe
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