On this page, we want to share some key information and links that we found particularly relevant for people living with lupus in Europe. These can be recent scientific publications, information, news from our members, old articles that are still very valuable today. we will update this selection as new articles pop up, so come back regularly…

While we do our utmost to select credible sources of information and quality publications, the articles and links reflect the views of their authors rather than of LUPUS EUROPE.

LATEST LUPUS EUROPE NEWS

See our latest Blog articles, initiatives or projects.

Living with lupus in 2020 - SURVEY PUBLISHED

Thank you to the 5922 respondents

Hydroxychloroquine Dosing survey

Our survey on HcQ dosing, retinopathy and adherence is published in Lupus Science and medicine!

Anifrolumab

Anifrolumab has now been approved by the European Medicines Agency (EMA) as an add-on therapy for the treatment of active, moderate to severe SLE

Lupusreference TWEETS

Prof. L. Arnaud is very active on twitter, often with recent news in 1 slide

EULAR on Vaccination

Read the updated EULAR recommendations for vaccination of people with an autoimmune inflammatory rheumatic disease

WANT TO MAKE A POSTER?

See attached Simon Stones slides explaining how to make a poster for a scientific event!

COVID impact on rare diseases patients

look at the attached infographic made by EURORDIS based on 6945 answers

This is Living

Go to the campaign's autoimmune conditions webpage!

Do you know ERN ReCONNET

This is the European Reference Network responsible for lupus

VACOLUP Study

Learn about the Tolerance of COVID19 Vaccines in Lupus Patients

EULAR 2021

Read Our Top Takeaways from EULAR 2021

EULAR 2021

Summary of Key Abstracts on Lupus Treatment - by Prof. Arnaud

What are ERNs?

Find out about Patient Involvement in the ERNs

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5 days ago
LUPUS EUROPE

We are excited about getting our National Member news out to the world, so more people can find out what it is happening in each country and each member organisation! We caught up with Gaia VonÖrn from the Reumatikerförbundet, who has told us so many interesting things. Read about the unmet needs in Sweden:

"People must be able to access specialist care for their lupus in order to get their disease under good control. We need a lot more awareness about lupus in Sweden. In our experience, GPs can have poor knowledge and awareness of lupus, and this can cause serious delays in referrals to rheumatology clinics for initial consults. Patients often have very late diagnoses and can develop complications from their lupus".

"We believe it is important for patients to have access to pain specialists. Many lupus patients suffer from chronic pain and it can take a very long time to access pain clinics. Pain specialists are crucial in educating patients on pain management and the options available to them and to follow up people to ensure their pain is well managed".

Tell us! Where do you live? Do you think these unmet needs are common in European countries?

You can read more about the Swedish Rheumatism Association in our blog:
... See MoreSee Less

We are excited about getting our National Member news out to the world, so more people can find out what it is happening in each country and each member organisation! We caught up with Gaia VonÖrn from the Reumatikerförbundet, who has told us so many interesting things. Read about the unmet needs in Sweden: 

People must be able to access specialist care for their lupus in order to get their disease under good control. We need a lot more awareness about lupus in Sweden. In our experience, GPs can have poor knowledge and awareness of lupus, and this can cause serious delays in referrals to rheumatology clinics for initial consults. Patients often have very late diagnoses and can develop complications from their lupus.

We believe it is important for patients to have access to pain specialists. Many lupus patients suffer from chronic pain and it can take a very long time to access pain clinics. Pain specialists are crucial in educating patients on pain management and the options available to them and to follow up people to ensure their pain is well managed.  

Tell us! Where do you live? Do you think these unmet needs are common in European countries?

You can read more about the Swedish Rheumatism Association in our blog:
6 days ago
LUPUS EUROPE

Thanks to the hard work of investigators and a more active participation of patients in investigation we know more about lupus, its pathogenesis and management. However, we still have many questions without answer.

What is the one for which you most wish there was an answer?
#Lupus100. In collaboration with ERN RECONNET, Katana Santé and Fai2r
... See MoreSee Less

Thanks to the hard work of investigators and a more active participation of patients in investigation we know more about lupus, its pathogenesis and management. However, we still have many questions without answer.

What is the one for which you most wish there was an answer?
#lupus100. In collaboration with ERN RECONNET, Katana Santé and Fai2r

Comment on Facebook

What are the chances of finding a cure for lupus today compared to 20 years ago? Still the same, better, surprises ahead?

Can we hope in a solution for the extreme fatigue we feel after our very good doctors manage to put us in remission?

6 days ago
LUPUS EUROPE

The “Living with lupus in 2020” survey has highlighted the need for change in access for #lupus patients. That is why we chose "Access" as the theme of our 2022 #LupusConvention.

What is your experience in regard to acces?

You can read the full convention report here:

www.lupus-europe.org/wp-content/uploads/2022/09/Convention-Report-2022-1-1.pdf
... See MoreSee Less

The “Living with lupus in 2020” survey has highlighted the need for change in access for #lupus patients. That is why we chose Access as the theme of our 2022 #LupusConvention. 

What is your experience in regard to acces?

You can read the full convention report here:
  
https://www.lupus-europe.org/wp-content/uploads/2022/09/Convention-Report-2022-1-1.pdf