Marisa CostaAs relayed in the media, Hydroxychloroquine (Plaquenil, Quensyl,…) is being investigated as a potential treatment for COVID-19 related pneumonia. We all hope that it will help improve the outcomes of those affected by the disease. Unfortunately, in some countries, this has resulted in stock-piling, and the unplanned increase in demand has created shortages, causing anxiety […]
Alain CornetDid you know? Lupus is a Rare Disease! Lupus is rare, but not for us! Come and join us working on our vision: A fulfilling life for all people with Lupus in Europe until we have reached a world without Lupus What is a rare disease? It changes from country to country, but in Europe […]
Alain CornetWe are very proud to announce that LUPUS EUROPE has been recognized by the EMA (European Medicine Agency) as “eligible entity”, the select network of patient organizations that work with the EMA to ensure that the needs and concerns of a wide range of patients are represented via direct contact with the Agency. This status […]
Alain CornetWe all know that there remains a lot to explore, and many unmet needs are still there, with regards to lupus and people living with lupus in Europe and in the world. Since March 2018, a multidisciplinary team including doctors, academics and patient advocates have shared their thoughts and aligned priorities to improve lupus care. […]
Alain CornetAs announced in today’s Webinar, LUPUS EUROPE is offering new opportunities for people living with lupus to volunteer and support the cause. Specifically, we are looking for 6 new members for our Patient Advisory Network, and 6 more to create a new Lupus Communication Group. PATIENT ADVISORY NETWORK (PAN) The PAN is a network of people having lupus that structurally […]
We have exciting news!!!
Lupus Europe keeps growing! Sara Badreh has now joined our team as the Patient Advisory Network (PAN) coordinator!
We are very excited to be working with Sara; you can read more about her in our newsflash!
What is the PAN?
At LUPUS EUROPE we believe that patients have great potential to be an added value in research and development. That's why we invest in training and have created our PAN: trained patients involved in research projects with organisations like EULAR, the European SLE Society and ERN Reconnet.
The PAN is formed by 25-30 trained and energised patients, experienced in living with #lupus, appointed by LUPUS EUROPE to act as liaison and resource to value-adding scientific projects, clinical trials and other research related to lupus. They also had an active role in #LUPUS2022!
The PAN also connects the patient community to the scientific community by providing prompt, reliable and consistent advice and support from the very initial stages of research all the way to effective access through treatment plan
Do you want to see what it is like to be part of the PAN? In this video, Francesca shares her insight
youtu.be/eJtGDtL9Ngg
Do you want to be part of this amazing team?
If the answer is "YES”, e-mail zoe@lupus-europe.org and find out more about it. No previous knowledge needed!
Don't miss our Newsflash, where our Chair, Jeanette Andersen, introduces Sara Badreh, talks about her background and her role in Lupus Europe.
Welcome to the team Sara!
mailchi.mp/lupus-europe.org/lupus-europe-newsletter-january-2023
Remember!
Our #kicklupus competition is running! Get your chance to attend our #lupusconvention and see firsthand all that we are doing for the European #lupus community!
All you have to do is tell us how volunteering for a lupus organisation has helped you changed your life. Send your testimonial (drawing, short/long text, song... any format is valid!) to zoe@lupus-europe.org.
As our Chair, Jeanette Andersen says, you can do it in your own language!
Comorbidity occurs when a person has more than one disease or condition at the same time. 2 of the most frequent comorbidities in #SLE are cardiovascular diseases and infection.
Prevention is key.
As per Dr. Angela Tincani says, "don't be worried because you have a higher risk than the general population. Take action to prevent it because there are several effective strategies:
- Stop smoking
- Have a healthy diet
- Do exercise
- Follow what your Dr. says.
Learn more about prevention and lupus here:
youtu.be/l10LsKDDkuY
Remember that next Wednesday, 18th January, at 17:00 CET (i.e. Paris time), we will be able to learn the latest data on #fatigue in #SLE thanks to Prof. Arnaud and Lou Kawka.
Don't miss this amazing ERN RECONNET webinar and register now!
us02web.zoom.us/webinar/register/WN_s-I4UVxsTW-eJd3bKPLvSg
