Alain CornetHelp us understand the multiple facets of life with lupus today…
Alain CornetSince Hydroxychloroquine (HcQ) has been regularly mentioned in media as a potential medication in the fight against COVID, the number of patients highlighting unavailability issues increased substantially. With the help of its members, LUPUS EUROPE initiated a survey amongst patients to obtain broad based feedback on the magnitude and impact of the issue. Results covering […]
Alain CornetOver the past weeks, LUPUS EUROPE and several of its members have worked to improve availability of Hydroxychloroquine for people with lupus in Europe, as speculations on its possible use for COVID treatment have resulted in an increased (off-label) demand. Our objective is that all patients with a chronic condition requiring Hydroxychloroquine have access, if […]
Alain CornetLUPUS EUROPE and the ERN ReCONNET Patient representatives have launched a short survey to better understand how we can improve quality of life for people living with a rheumatic condition through better patient education. If you are a patient living with a Rheumatic condition or any other Chronic or rare disease, simply follow this link […]
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 would very much like to share some news with you! If you are a Lupus Europe member or potential member, volunteer or potential volunteer, or simply a member of the patient community interested in the activities of LUPUS EUROPE, join us on February 17, 2020 at 20:00 Paris time. On the agenda:– Introduction of […]
As part of its cooperation with the ERN ReCONNET, Lupus Europe is launching an important survey, which we would like to ask you to disseminate as largely as you can to people actually living with lupus. We have made the effort of providing 13 different languages, and are open to adding new ones, so we hope […]
Alain Cornet30 Years ago, on May 26, 2019, LUPUS EUROPE’s Constitution (then under the name of ELEF) was signed… The European Lupus Federation was born. as we celebrate this anniversary, we asked current and past Chairs to reflect on those years in support of People living with lupus in Europe. Yvonne Norton, Chair from 2002 […]
Alain CornetThe 22nd EULAR Annual European Conference of PARE took place in the stunning, historical city of Prague in the Czech Republic 5-7 April 2019 with over 120 delegates. PARE ‘People with Arthritis and Rheumatism in Europe’ forms an integral role at EULAR ‘The European League Against Rheumatism’. The presentations and workshops at the PARE Conference […]
Many of the treatments used in #lupus are not specifically approved for #SLE. However, they have been proven to be safe and effective. If you wish to learn more about drug repurposing, don't miss out #EULAR2022
📢 Attend the #EULAR2022 Scientific session:
👨⚕️ Drug repurposing in Rheumatology: from bench to bedside
👉 Learning objectives https://bit.ly/3jWYONi
🔔 Accessible on #EULAR2022ondemand until 31 July
⭐ Register now https://congress.eular.org/registration.cfm
@EMEUNET
@eularPAED
@eularHPR
📢 #Lupus is one of the 7⃣ diseases being researched in #3TR and specifically one of 3⃣ #autoimmune diseases within the project. Today, on 🌎 #WorldLupusDay, we want to draw attention to researchers and doctors working with lupus, as well as patients affected by the disease❗️ 👇 https://twitter.com/LupusEurope/status/1523913785194516481
Today is #WorldLupusDay!
Watch as Prof. Mosca & Jeanette Andersen, our Chair, discuss #lupus, the patient perspective, how patients can contribute to #research & much more! #MakeLupusVisible https://youtu.be/XpBEt0mA32k
cc @ern_reconnet
🆕 We asked doctors and #SLE patients 🏥 separately what they think are the most important disruption points 💥 in #lupus patient pathways...well it's really interesting ⬇️ and we CAN DO MUCH BETTER 👍
Check the full paper (free openaccess 🔓) at: https://lupus.bmj.com/content/lupusscimed/9/1/e000700.full.pdf
Free openaccess paper: "Improving #patient #pathways for systemic #lupus erythematosus: a multistakeholder pathway optimisation study"
#SLE #SystemicLupusErythematosus https://twitter.com/Lupusreference/status/1526075413260279810
🆕 Check our latest paper: "Improving #patient #pathways for systemic #lupus": we asked 🔎 SLE patients and various doctors (GPs, specialists, public/private...) about the MAIN DISRUPTION POINTS in lupus care. It was VERY INFORMATIVE👍
📥FREE openaccess at:http://dx.doi.org/10.1136/lupus-2022-000700
Every year, on May 20th, we commemorate World #AiArthritisDay.
Join us on this event and DRIVE awareness for these conditions that, like #lupus, affect the lives of 450 million people in the world.
Please visit @AIArthritisDay for more information
Get your engines started! Join us for World #AiArthritisDay this Friday, May 20th!
@behcets_usa @ArthritisNetwrk @CureArthritis @ArthritisNZ @AARDATweets @spondylitisCA @CreakyJoints @GHLForg @ndb_org @StopSarcoidosis @Looms4Lupus @LADAOrg @LupusEurope @LUPUSUK @NASSexercise
✅ May is #lupusawareness month
Let's (re)view the various types of #lupus: systemic (#SLE), cutaneous (CLE), neonatal (anti-SSA antibodies going through the placenta), and drug-induced lupus. ⚠️ Some disease names "contain" the word lupus but are not: lupus pernio & vulgaris.
Potencially interesting for #lupus patients as the objectives of the session at #EULAR2022 will be
-The use of glucocorticoids in #SLE & strategies to minimize their use
-When it is possible to withdraw steroids
- Evaluate therapeutic options in difficult to treat SLE
📢 Attend the #EULAR2022 Scientific session:
👨⚕️ Clinical challenges in SLE
👉 Learning objectives https://bit.ly/38IczNF
🔔 Accessible on #EULAR2022ondemand until 31 July
⭐ Register https://congress.eular.org/registration.cfm
@EMEUNET
@eularPAED
@eularHPR
SLE is a chronic systemic autoimmune disease that can affect many organs, including the skin, lung, kidney, heart, brain & joints, with different grades of severity. There exist a range of coping strategies lupus patients may uses to deal with the impact #SLE has on their lives.
🆕 Check our latest paper: "Improving #patient #pathways for systemic #lupus": we asked 🔎 SLE patients and various doctors (GPs, specialists, public/private...) about the MAIN DISRUPTION POINTS in lupus care. It was VERY INFORMATIVE👍
📥FREE openaccess at:http://dx.doi.org/10.1136/lupus-2022-000700
📣 Join us in #YoungPAREwebinar "Coping with a diagnosis – Accepting your diagnosis can make you stronger"!
📅 19 May 2022, 20:00 - 21:00 CEST
Register / Login to attend 👉 https://bit.ly/3s8poaV
#eularPARE #EULAR #YoungPARE #rheumatology #FightingRMDsTogether #rheuma
✅ May is #lupusawareness month
Let's (re)view the DORIS definition of #remission ⬇️ for #Lupus (from this: http://dx.doi.org/10.1136/lupus-2021-000538)
- No clinical disease activity
- Physician assessment of disease activity <0.5 (0-3 scale)
- Max 5mg/day predniso(lo)ne
- Stable immunosuppressive
🆒 Are you curious to know how to use #twitter to educate, perform #research, engage patients & build meaningful collaborations? Don't miss my @EMEUNET invited talk about #socialmedia & #rheumatology at #EULAR22, the 1st of June 2022 at 14:15 (Auditorium 10) 👍
✅ May is #lupusawareness month
Let (re)view ⬇️ the many #skin manifestations of cutaneous #Lupus. The former classification into acute / subacute / chronic CLE remains but many new specific involvements have been described over the past years.
Oh woaw, thank you @LupusEurope for quoting our paper 😍 about long term outcomes in #Lupus ⬇️ https://twitter.com/LupusEurope/status/1525094899573575682
Therefore, "good control of disease activity, minimization of glucocorticoids exposure and lifestyle optimization are of great importance" for #lupus patients https://academic.oup.com/rheumatology/article/59/Supplement_5/v29/6024730
According to this study by @Lupusreference et al., "patients with #SLE have 2- to 10-fold increased risk of clinical CVD compared with the general population".
#LupusAwarenessMonth
✅ May is #lupusawareness month
Let (re)view ⬇️ the main determinants of #cardiovascular risk in #Lupus 🔎
Our chair, Jeanette Andersen, will be the leader of the #StenePrize2022 jury. The competition gives #RMD patients the opportunity to share their experience of living with an RMD.
Be an inspiration to other #lupus patients and physicians. Participate in 2023 Edgar Stene Prize
📣 We look forward to hosting you at the #EULAR2022 opening plenary in which we will award the #StenePrize2022.
Register to attend 👉 https://congress.eular.org/registration.cfm
@EMEUNET
@eularPAED
#EULAR #Rheumatology #rheuma
20% of patients with lupus are below their 20's.
Although it is rare for a child to develop #lupus before 5 years of age, children can also have lupus. Therefore this session chaired by prof. @TadejAvcin & prof. Maya H Buch might be of interest for patients/caregivers #EULAR2022
📢 Mark your calendar! Get the highlights from the #EULAR2022 sessions on Paediatric Rheumatology:
👉 Scientific programme https://bit.ly/3LRMp9m
🔔 Accessible on #EULAR2022ondemand until 31 July
⭐ Register now https://congress.eular.org/registration.cfm
@eular_org
@EMEUNET
@eularHPR
#eularPAED
Patients have evolved from passive subjects to active contributors in the field of medicine. Learn the relevance of the involvement of patients and how you can get involved attending this #EULAR2022 session chaired by @SjogrenpowerAna and Dr. Maarten de Wit
📢 Attend the #EULAR2022 Scientific session:
👨⚕️ Enhancing research through patient involvement
👉 Learning objectives https://bit.ly/37KFyA0
🔔 Accessible on #EULAR2022ondemand until 31 July
⭐ Register now https://congress.eular.org/registration.cfm
@EMEUNET
@eularHPR
@eularPAED
@eularYoungPARE
Studies suggest that up to 25% of #SLE patients have #fibromyalgia too, a chronic condition that causes widespread pain, esp. in tender points. In 2017 @eular_org published recommendations for the management of fibromyalgia
#FibromyalgiaAwarenessDay
EULAR revised recommendations for the management of fibromyalgia
Objective The original European League Against Rheumatism recommendations for managing fibromyalgia assessed evidence up t...
buff.ly
Every 12th May the world commemorates #InternationalNursesDay, a figure that can play an important role in patient education, and #lupus management. We would like to thank all nurses in Europe for their dedication, care and hard work.
SLE is a chronic systemic autoimmune disease that can affect many organs, including the skin, lung, kidney, heart, brain and joints, with different grades of severity. There exists a range of coping strategies lupus patients may use to deal with the impact SLE has on their lives.
Alain Cornet, Davide Mazzoni, Angela Edwards, Dario Monzani, Gabriella Pravettoni, Jeanette Andersen and Prof. Marta Mosca analysed data from the "Living with Lupus in 2020" survey and were able to identify the most frequent words used by patients to describe their coping strategies, grouping them into significant themes. Five themes, corresponding to as many coping strategies, were identified and all strategies were quite important for patients.
The study's authors were also able to test the possible association between these themes and some patient characteristics. The results of this study have strong implications for clinical practice and for interventions aimed at improving patients' quality of life.
Read the full research by clicking on the link below:
lupus.bmj.com/content/9/1/e000656
Coping with systemic lupus erythematosus in patients’ words
lupus.bmj.com
Objective Previous research on coping strategies of patients with SLE showed that there are no absolute adaptive or maladaptive strategies and that the range of potential coping strategies is large an...
As much as we love hearing from you all and appreciate the time you take to share how you #kicklupus and inspire others, we cannot allow any content specifically about healing products for lupus.
We would greatly appreciate if you followed this rule when posting on the page.
Thank you
#WorldLupusDay finishes today, but #lupusawareness does not. There is so much more we can do to make life with #lupus better. Watch our vice chair, Anne Charlet, talk about her journey of becoming a Board Member.
You can also join us and become a volunteer
Wauvvvv SO good looking :-)
On this #WorldLupusDay, we invite you to read this article written by our chair, Jeanette Andersen, Dr. Susan Manzi, Prof. Marta Mosca and Oatrick Wildman from Lupus Foundation of America.
As we mark #lupusawarenessmonth, and world lupus day, we want the global lupus community to join us in advocating for a better future for people living with lupus.
We need to define the standard of care that people living with #lupus deserve, which tackles the challenges across the patient pathway. Because, despite differences in care worldwide, the core challenges facing people living with lupus remain the same.
www.politico.eu/sponsored-content/a-call-to-action-setting-the-future-care-principles-for-people-...
www.politico.eu
Lupus Awareness Month 2022: Advocates for the 5 million people worldwide living with this often-debilitating autoimmune disease set the bar for quality care and better futures for patients.This all sounds great. One of the hardest things I have to deal with is specialist doctors thinking box standard treatment fits everyone. No one recognises there are levels of SLE and wanting to put one on daily meds & steroids just in case frankly is not acceptable. The side effects cause worse issues often than the disease & without testing and clear diagnosis every symptom is put down to Lupus and not side effects of drugs developed not for lupus from decades ago. This to me & others is an ongoing battle 💜 Thus protect your organ mantra needs to stop the drug I was put on has done far more harm than my lupus ever will 😞
