activities

 

EULAR PARE virtual conference 2021

november 18-20, 2021

Some Sjögren Europe Board members took part in the EULAR PARE* virtual conference 2021. Linda, Joyce and Alice represented Sjögren Europe and Ana and Katy also took part, representing their national organization.

We had the privilege to make a poster and a short video presenting one of our projects during the conference at the Best Practice Fair Award. We chose to present the campaign about fatigue that we did for World Sjögren's Day 2021. You can download our poster in pdf by clicking on the picture below:

We are very proud to announce you that Sjögren Europe won the first prize at the Best Practice Fair Award for this campaign among more than 25 other different projects!

Four years ago, Sjögren's was not represented at EULAR PARE and many did not know that it was a rheumatic disease. But here we are! We have come a long way, and we still have a long way to go. But we have more visibility and that is already a big step! Many thanks to EULAR PARE for their warm welcome among them!

As mentioned in the poster and in the video, the participation of our member organizations and patient communities in this campaign, helping with translation and/or dissemination, was critical to its success. This campaign and this prize are also theirs and Sjögren's patients': it is the reward for our combined efforts.

The Sjögren Europe team would like to thank you for your trust and support and to underline the amazing job our members do at their national level, which is our basis for moving forward.

*EULAR is the European Alliance of Associations for Rheumatology and the PARE community gathers the organizations which are members of EULAR and which represent people with a rheumatic condition

 

world sjögren's day 2021

july 23, 2021

check our dedicated page for more information and to discover our campaign about fatigue

 

 fatigue in sjögren's

live webinar with Prof Wan-Fai Ng

Professor of Rheumatology, Newcastle University Honorary Consultant Rheumatologist, Newcastle Hospitals NHS Foundation Trust Deputy Director, NIHR Newcastle Clinical Research Facility (CRF) Academic Lead, NIHR Bioresource Centre in Primary Sjögren’s Syndrome (pSS)

Member of the Medical Board of Sjögren Europe and Trustee of the British Sjögren's Syndrome Association

Monday June 14th 2021, 18:00 CET (Paris, Berlin, Madrid time)
Kick-off event for the World Sjögren's Day on July 23rd 2021 about Fatigue

You can watch the webinar on replay just below or on our YouTube channel and download the slides of the webinar here!

 

Sjögren Europe (SE) and The British Sjögren's Syndrome Association (BSSA) hosted a live webinar about fatigue in Sjögren's.

Chronic fatigue is one of the most prevalent and debilitating symptoms in primary SS (pSS). Approximately 70% of pSS patients suffer from disabling fatigue, which is associated with reduced health-related quality of life. Fatigue in primary SS clearly differs from ordinary tiredness. We describe it as an ever-present, fluctuating, and nonrelievable lack of vitality being beyond one's own control.  In this webinar, Prof. Fai Ng will review the instruments used for evaluating pSS-related fatigue, the current understanding of the underlying psychosocial and physiological mechanisms of fatigue in pSS and the therapeutic strategies that have been studied in the management of fatigue in pSS.

The webinar is the kick-off event of Sjögren Europe activities for the World Sjögren's Day 2021 on July 23rd. This year the topic is Fatigue and several events about this topic will be implemented from June 14th in order to celebrate this day.

This webinar has been organized with the help of unrestricted grants from SERVIER, NOVARTIS and NORGINE. Sjögren Europe strictly follows the EFPIA code. Sjögren Europe and the content of the webinar are totally independent from these companies.

 

why and how getting involved in sjögren research?

live webinar with Maarten de Wit

Advisor for participation in research and integration of patient perspective in healthcare, Chair EULAR study group for Collaborative Research, the Netherlands

Wednesday May 26th 2021, 18:00 CET (Paris, Berlin, Madrid time)

You can watch the webinar on replay just below or on our YouTube channel!

 

In this webinar, Maarten de Wit explains why it is important that people with Sjögren's collaborate with researchers to improve scientific research and ensure better outcomes for patients. He argues that by combining different strategies of patient involvement, research will benefit from the knowledge that people with first-hand experience bring to the table. Therefore he introduces different roles of patients in research and reflect on the pros and cons of each patient role.

This webinar has been organized with the help of unrestricted grants from SERVIER and NORGINESjögren Europe strictly follows the EFPIA code. Sjögren Europe and the content of the webinar are totally independent from these companies.

 

sjögren awarenenss month

April 2021

Sjögren Awareness Month aims to raise awareness on Sjögren's. During this month we publish different contents on our social media channels.

 

sjögren's clinical trials: an update

live webinar with Prof Hendrika Bootsma

Head of department Rheumatology and Clinical Immunology, University Medical Center Groningen, the Netherlands

Wednesday March 24th 2021, 13:00 CET (Paris, Berlin, Madrid time)

The objective of this webinar is to provide accurate and up-to-date information about research on Sjögren's Syndrome.

You can watch the webinar on replay just below or on our YouTube channel!

 

This webinar has been organized with the help of unrestricted grants from SERVIER and NORGINESjögren Europe strictly follows the EFPIA code. Sjögren Europe and the content of the webinar are totally independent from these companies.

 

vaccination by people with auto-immune rheumatic diseases

live webinar with Prof Ori Elkayam

Head, Rheumatology Department, Tel Aviv medical centre, gave an overview of vaccination for patients with rheumatic diseases and an update on what is known so far about COVID 19 vaccines.

Wednesday March 3rd 2021, 19:00 CET

You can download the slides of the presentation here.

The aim of this webinar is to provide accurate, quality and up-to-date information to enhance understanding of this hot topic and help you make informed decisions.

Sjögren Europe doesn't tell you whether or not to be vaccinated - this decision is up to you with the personal advice of your medical doctor.

This webinar has been organized with the help of unrestricted grants from SERVIER and NORGINESjögren Europe strictly follows the EFPIA code. Sjögren Europe and the content of the webinar are totally independent from these companies.

 

sjögren's now

live webinar
November 3, 2020

You can watch the webinar on replay just below or on our YouTube channel!

You can download the invitation and program pdf file here

This webinar has been organized with the help of unrestricted grants from SERVIER and NORGINE. Sjögren Europe strictly follows the EFPIA code. Sjögren Europe and the content of the webinar are totally independent from these companies.

 

general assembly 2020

September, 13

The General Assembly was originally planned in Athens during our 1st patient conference. Due to the  Covid-19 situation, the conference has been postponed and this Assembly was organized virtually with Zoom. The General Assembly is for Members to discuss the organization and its activities. This meeting was open to observers. You can find below the draft of the Minutes of this meeting.

General Assembly 2020 Minutes

 

world sjögren's day 2020

July, 23rd

Have a look at our campaign about the invisibility and the burden of Sjögren's on our specific webpage. Sjögren's is a multifaceted and polymorphous disease. It's a real burden. To live with Sjögren's is a journey: we all have our own path and have to walk it by ourselves; but we are not alone. Keep going, at your own pace. If you can, connect to yourself and connect to others in a meaningful way. We want to acknowledge the difficulties of the disease while having a constructive attitude.

"We are like islands in the sea, separate on the surface but connected in the deep"

William James

 

 

eular congress and general assembly 2019, madrid

June 14, 2019

Read a summary of our presentation at EULAR:

Oral presentation - PARE abstract session 1

General Assembly:

First General Assembly of Sjögren Europe with members representing Portugal, United Kingdom, Finland, Netherlands, France, Switzerland, Spain and Greece. Some members of the Medical Board were also present, such as Prof. Chiara Baldini, Prof. Hendrika Bootsma, Prof. Wan-Fai Ng and Dr Juan Ovalles.
The president of the Sjögren's Syndrome Foundation, Steven Taylor, was keen to participate in this historical event, which we hope will be a milestone of a new era for Sjögren patients in Europe and worldwide.