Alain CornetDear Members, You might have received a mail from PatientView, seeking input to their study on the corporate reputation of the pharmaceutical industry in 2015— from the perspective of patient groups. We also know that some of you have not received it, and would be interested in taking part. We therefore relay the information so […]
Alain CornetOur first patient stories have arrived in our inbox. What a treat to read and something we look forward to sharing with you all in the near future. We are still looking for further contributions so, if you’re wondering what to do with all that spare time over the holidays (and beyond), don’t worry, the […]
Alain CornetInput is being sought from European Patients’ Forum members on the Patient Empowerment Charter. The deadline for feedback is 10th January 2016. For more information please click here. The European Patients’ Forum has also put together its draft position paper on Cross Border Healthcare. Feedback is invited from member groups. More information here.
Alain CornetThe final dates have been set for the Patient Panel. The Patient Panel is seeking participants and will take place in Brussels from March 11-13th 2016. This is a rare and unique opportunity for patients to participate in a truly worthwhile experience. All costs, travel, accommodation and meals are reimbursed. For further information, please click […]
Alain CornetLupuzorTM enters phase III Press release from the CNRS Paris, 15 December 2015 LupuzorTM may become the first specific and non-immunosuppressant therapy for lupus, a disabling autoimmune disease that is currently incurable. Discovered by Sylviane Muller’s team in the CNRS Immunopathologie et Chimie Thérapeutique laboratory, in Strasbourg, this peptide is the subject of a CNRS […]
Alain CornetA UNIQUE OPPORTUNITY to meet people living with lupus from around Europe LUPUS EUROPE is looking for people interested in participating in its 2016 Patient panel which will address the burden of living with lupus, with a particular focus on treatment day after day. The questions discussed by the group will cover the realities […]
🇸🇪 Spotlight on Lupus Sweden!
💜 At our #LupusConvention, they shared inspiring work to raise awareness & build connections. From their children’s book “My mother can have a butterfly on the nose” to national World Lupus Day events & their new SLE awareness pin.
👏 Congrats!
Watch now the 3rd ERN ReCONNET Sharing Good Practice initiative
➡️ https://youtu.be/8ko8sBwDm9U
Experts discussed key best practices for rCTDs: CPMS, advanced diagnostics, LupusGPT, and Personalized Integrative Care.
Moderated by Dr. Rosaria Talarico and ePAG advocate Ilaria Galetti.
🦋 #Lupus is a rare autoimmune disease that can potentially impact every aspect of life, from daily activities and social interactions to work and access to support.
✍️ Participate in the #RareBarometer survey by @eurordis & make your voice heard
https://www.sphinxonline.com/surveyserver/s/EURORDIS75/MH_interface/questionnaire.htm
🚨Hurry-up and Register to EMEUNET/YNP joint⏰
Webinar “Lupus nephritis: What do the new guidelines say?” from the Visibility&Global Affairs Sub-Committee.
We hope to see you all there!
Free registration: https://pulse.ly/fiohw15eey
#EMEUNET #YNP #rheumatology #nephrology #lupus
📣 #LupusGPT was at the @eupatientsforum Congress! The largest European event for patient involvement in healthcare, policy & research.
💜Big thanks to @Jeanette_Lupus for her work & to Cathrine Hjelmeset for representing us & showing patient-led innovation!
#EPFCongress2025
✅ Have you ever used #quinacrine for the treatment of cutaneous or systemic #Lupus? Check ⬇️ how this treatment is perceived by the community, in terms of efficacy and safety in our latest paper with #SLICC & CaNIOS members
A Global Survey of Quinacrine Use in Systemic and Cutaneous Lupus Erythematosus
Objective Experiences with the antimalarial quinacrine for systemic and cutaneous lupus erythematosus (SLE and CLE) rema...
doi.org
📑According to Living With #SLE 2020 Survey:
🎓50.7% of people diagnosed before 25 reported that the disease negatively impacted their studies.
@jeanette_lupus @lupusreference et al https://lupus.bmj.com/content/8/1/e000469
#WorldDisabilityDay
#IDPWD
#InternationalDayOfPersonsWithDisabilities
🌍 More than 200,000 people live with #lupus in Europe.
🚨 Some #SLE patients have physical disabilities due to the impact of symptoms like fatigue, joint pain, & organ involvement, which could make daily life and work challenging.
#WorldDisabilityDay
#IDPWD
🇸🇪 Spotlight on Lupus Sweden!
💜 At our #LupusConvention, Riksföreningen för SLE (Lupus Sweden) shared their inspiring work to raise awareness, spread knowledge and build connections across the lupus community in Sweden.
💬 Formed in 2017 as part of the Swedish Rheumatism Organisation, they now count almost 160 members. Their mission: to spread knowledge about lupus and counteract loneliness.
📘 One of their most beautiful achievements in 2024 has been the release of a children’s book, “My mother can have a butterfly on the nose”, written to help younger children understand what it’s like to live with a parent who has lupus.
🌸 Every May, they celebrate World Lupus Day with a national theme day, a tradition started in 2013! Each year, the event takes place in a different city so that all members across Sweden can feel included and represented.
🦋 Recently, they also launched a new lupus/SLE awareness pin, raising funds for lupus research and making lupus more visible to the public.
👏 Thank you, Lupus Sweden, for your dedication, creativity and compassion. A great example of how patient organisations bring people together and make lupus visible!
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📢 Calling all #lupus patients!
🦋 Lupus is a rare autoimmune disease that can potentially impact every aspect of life. From daily activities and social interactions to work and access to support, living with #SLE presents unique challenges that need to be addressed.
✍️ That is why we invite you to participate in the #RareBarometer survey by EURORDIS-Rare Diseases Europe.
Your insights can make a difference and help shape future policies that support people living with this condition.
🙏 Thanks for sharing your experience!
www.sphinxonline.com/surveyserver/s/EURORDIS75/MH_interface/questionnaire.htm
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📣 LupusGPT was featured at the European Patients’ Forum (EPF) Congress in Brussels!
The EPF Congress is the largest European event dedicated to strengthening patient involvement in healthcare systems, policy and research. It brings together leading voices from the European patient community and cross-sector experts to build more resilient, inclusive and patient-centric healthcare across Europe.
💜 This year, our #LupusGPT poster was present thanks to the work of our Chair, Jeanette Andersen, and the support of Cathrine Hjelmeset from Lupus Norway and the Lupus Europe PAN, who represented us in Brussels. We are deeply grateful for their commitment.
🙏 We would also like to express our sincere gratitude to the EPF team for their remarkable support throughout the process. Their dedication ensured that LupusGPT was fully represented at the Congress, and we truly appreciate their efforts.
🧡 LupusGPT is built by patients to provide clear, accessible and reliable information, collaboratively validated by doctors and patients, about lupus in almost any language.
Try it now: lupusgpt.org/
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🟣 Living with systemic #lupus erythematosus can be a daily challenge for over 200,000 people across Europe, many of whom live with physical disabilities.
In fact, our Living With Lupus 2020 survey reveals the profound impact #SLE can have:
🔹 57.9% of respondents said SLE negatively affected their careers.
🔹 Nearly 50% faced challenges in daily activities, from studying to family life.
🔹 Fatigue remains the most reported symptom, affecting 85.3% of patients.
🦋 These figures highlight the need for greater awareness, inclusivity, and tailored support for those living with disabilities or chronic conditions like lupus.
🔊 On this International Day of Persons with Disabilities, let’s raise awareness to build a society where barriers are reduced and opportunities are accessible for all.
#WorldDisabilityDay
#IDPWD
#InternationalDayOfPersonsWithDisabilities
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