All the latest news from LUPUS EUROPE!

all the latest news
from LUPUS EUROPE
OCTOBER 2021

LUPUS EUROPE
Convention 2021

10 Pratical Sessions

Despite being in the midst of yet another challenging year with COVID19, Lupus Europe was able to host its 32^nd Annual Convention from September 24^th to September 26^th. The event was held online; our second online Convention.

We chose to see this as an opportunity to both open our Convention to a wider audience and to directly involve our delegates in the selection of topics they would like to see discussed in the Convention and thus the “10 Practical Sessions to Improve your Life with Lupus” was born.

Convention participants this year came from: Germany, Slovenia, Cyprus, the Netherlands, Belgium, Iceland, Lithuania, Denmark, Greece, Poland, Bulgaria, Italy, France, Iceland, Portugal, Spain, Slovakia, Switzerland, Ireland, Israel, Russia, Sweden, Romania, France, Estonia, Finland, Norway, Czech Republic and the UK.

We had 253 registrations this year. A number of participants were directed to the Lupus Europe Facebook page to follow the sessions as they livestreamed. Our Facebook participants were able to raise questions during the sessions and fully participate in the sessions. The Zoom part of the Convention was restricted to Lupus Europe National Member Delegates, Partners and Official Volunteers. Zoom participants were also able to take part in the workshops that took place after each talk; these were not livestreamed.

Most sessions were transmitted live or uploaded on Lupus Europe´s Facebook Page. The number of views for each of those sessions are at present:

Lupus & Vaccinations 2092 views
Lupus & Wearables 633 views
Latest News in Lupus 1198 views
How Key Lupus Drugs Work 1731 views
Fatigue 2122 views
Interactions with Healthcare Professionals 691 views
Lupus & Social Life 1302 views

the Convention is STILL ONLINE
and most sessions are available
just click on the images

Jeanette Andersen, Chair of Lupus Europe, opened the Convention for our Zoom Participants and for our Facebook participants.
to watch this moment just click on the image

During the Convention opening we also played a video of the wonderful posters our National Members sent to us from around Europe specifically for the Convention.
to watch the video just click on the image

Prof. Marta Mosca talked us through how important it is for lupus patients to be vaccinated against a number of conditions such as flu, pneumococcus, meningococcus, HPV.
to watch the session just click on the image

Fitbit, Apple Watch, smartphones – devices that are with us every day. Watch Prof. Will Dixon’s talk to find out if wearables can help us live better with lupus.
to watch the session just click on the image

Professor Ronald van Vollenhoven felt that there might be a new day dawning in terms of lupus treatmentsand discussed how we can do things better, how we can have better therapies for lupus patients with existing medications or better treatments with new medications.
to watch the session just click on the image

Rheumatologist Dr. Elena Nikiphorou & Dietician Dr. Elena Philippou joined forces for a 60’ long interactive, evidence based session on diet and rheumatic diseases full of practical tips & tricks on food and lupus. We learned that an anti-inflammatory diet, like the Mediterranean diet, can make a big difference in rheumatic diseases and that a bit of dark chocolate and a glass of red wine may be good for us.

Dr. Natasha Jordan explained that fatigue has different features: physical, mental and emotional, also talked about the scientific aspects of fatigue in lupus including how difficult it is to measure fatigue. This session included practical tips & tricks on how to deal with fatigue in lupus.
to watch the session just click on the image

Dr. Tom O’Dwyer’s research interests are in physical activity, exercise & behaviour change interventions among individuals with musculoskeletal and rheumatic conditions. We all agree that exercise is a good thing, but how do we exercise safely for our lupus? How do we get started and maintain the habit?

to watch the session just click on the image

Dr. Arvind Kaul opened his presentation by saying that in a perfect world your medication would be the right one for your situation, stage of life, plans for a family, specific type of lupus and general health. Watch this presentation to find out how key lupus drugs work.
to watch the session just click on the image

Prof. Chiara Tani explained to us that according to research and patient feedback there is a communication gap between physicians and patients and that the views of the patients on communication are often very different from the views of physicians.
to watch the session just click on the image

Specialist Lupus Nurse Rebecca Gilman opened her presentation by going over the spoon theory, created by lupus patient Christine Miserandino. Sometimes lupus patients end up not pursuing certain careers or dreams they may have had because of their disease.
to watch the session just click on the image

what is happening

World ARTHRITIS Day 2021
12 October

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.

find out more about WAD here

take note!

NEW Associate Member

LUPUS RUSSIA

During our Convention, we also welcomed the Lupus Group of RRA Nadezhda from Russia as an Associate Member.

you can follow the group here

NEW Board of Directors

2021

At the General Assembly, held on Sunday 25^th of September 2021, Jeanette Andersen, Aldevina Sturiene, Amy Somers and Anne Charlet were elected to the Board of Directors of Lupus Europe.

After a General Assembly on Sunday, September 25th and a Board Meeting on Wednesday, September 29th, we are happy to present you with the new Board of Directors of Lupus Europe: Jeanette Andersen – Chair; Anne Charlet – Vice Chair; Annemarie Sluijmers – Secretary; Elfriede Wijsma – Treasurer; Marisa Costa – Board Member; Amy Somers – Board Member and Aldevina Sturiene – Board Member.

Annemarie Sluijmers, Jeanette Andersen, Elfriede Wijsma, Aldevina Sturiene, Amy Somers and Anne Charlet. (Marisa Costa is absent from the picture above, as she couldn’t be with us that evening)
to know more about the members click here

NEW PROJECT
SUBTITLES in your Language

We have an exciting new project aimed at increasing accessibility of good quality information for our National Members.

You may have noticed that most of our 2021 Convention sessions were subtitled in English. We decided to subtitle the Convention sessions in English to make them more accessible to our delegates.

We want to make sure our Member Organisations are enthusiastic and empowered. To that end we would like to facilitate the exchange of information on lupus by helping break down barriers to good information exchange.

Do you want to share any of Lupus Europe videos with your members, but find English to be a barrier? Would you like to share 2021 Convention sessions with members of your organisation subtitled in your own language? We can help!

Get in touch with zoe@lupus-europe.org to get more information about this project and learn how we can help you have access to Lupus Europe videos (i.e. Convention videos, webinars etc), subtitled in your own language.

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