@Fscleroderma

Federation of European Scleroderma Associations aisbl is working to make scleroderma a well-known disease.

 EUROPE
fesca-scleroderma.eu
Joined May 2012
  • Tweets1.3K
  • Following241
  • Followers1.1K
343Media
🚨 IT'S RARE DISEASE DAY GLOBALLY! 🚨 Join us marking #RareDiseaseDay 2024! Spread awareness, share stories, and support those living with rare diseases. Together, we make a lasting impact! #ShareYourColours
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If you are a patient with scleroderma, please join us to discuss CAR-T in SSc Feb 16, 2024 12:00 PM ET @scleroderma us02web.zoom.us/webinar/regi…
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Sue Farrington is a major player in many patient organisations—CEO of @WeAreSRUK, chair of both the @PiFonline and @RAIRDA_org and most recently, the president of @Fscleroderma. Sue outlines the importance of FESCA’s work. bit.ly/FESCA #Raynauds #Scleroderma
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Want to find out more? 🙋 Join Yann Le Cam, Avril Daly and Geske Wehr for a webinar discussing the pivotal CEO transition. 📆18 September 2023 ⏰5 pm (CET) 👉go.eurordis.org/JoiF1O
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🌟Discover our new Lay Summary on Non-pharmacological Management of Systemic Lupus Erythematosus and Systemic Sclerosis! Read more here 👉pulse.ly/urefnto1d7 #EULARRecommendations #LaySummary #Rheumatology #eularPARE @IoannisParodis @parodislab
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Este #DíaMundialDeLaEsclerodermia acompáñanos en un viaje de autodescubrimiento y superación emocional. El viaje de quienes enfrentan los desafíos de esta enfermedad día a día. Pero hoy, estamos floreciendo juntos. Nosotros #BloomWithScleroderma 🌻 youtu.be/jXJcPaW5oc4
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🌻🫶🌻 together we can #bloomwithscleroderma 🧡 👏 congrats @Fscleroderma for this video n campaign!
Fesca@Fscleroderma29 Jun 2023
🌻 This #WorldSclerodermaDay join us on a journey of resilience and self-discovery. The journey of those who face the challenges of this disease day by day. But today, we're blooming together. We #BloomWithScleroderma! 👉 Watch the full video: bit.ly/WorldSclerodermaDay23
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Today is #WorldSclerodermaDay, raising awareness of this autoimmune condition that affects the body by hardening connective tissues. We support research looking to discover new care & treatments for scleroderma. Keep an eye on our website for studies 👉 researchforthefuture.org/stu…
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🌻 #ERNReCONNET is happy to join the #WorldSclerodermaDay in collaboration with @Fscleroderma 🧡 As ERN ReCONNET we are proud to have developed a dedicated #SystemicSclerosis (SSc) #webpage with relevant n important ℹ️ , docs, references, #webinars: bit.ly/3PAm70r
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On #WorldSclerodermaDay let's spread awareness about #Scleroderma! Early diagnosis focuses on detecting symptomatic patients as early as possibile, it is the key to make a significant difference in treatment outcomes!
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Más del 90% de pacientes presentan #Raynaud En casos graves producen úlceras que se acompañan de dolor intenso Otra manifestación cutánea es la #calcinosis El próximo 29 de junio se celebra el #DME2023 #BloomwithScleroderma @Fscleroderma @AEEsclerodermia
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Attending presentation on update Eular treatment recommendations for SSc lead by @delgaldoFrances & @allanore. @iaiaraia & @FarrSue01 delighted to be involved as patient reps @Fscleroderma
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😊 there is still time to register to our @ern_reconnet #webinar on #SystemicSclerosis (SSc) with 2 top experts 👉bit.ly/42N22HG ℹ️ about SSC 👉 bit.ly/433bSFj @Fscleroderma @AOUCareggi @uzgent @iaiaraia @FarrSue01 @LPCDR8 @GILS_ODV #diagnosis #classification
ERN ReCONNET 🇪🇺@ern_reconnet12 May 2023
🆕 @ern_reconnet #webinar on "Diagnosis and classification of #SystemicSclerosis Present and future challenges" with Prof. Vannessa Smith and Prof. Marco Matucci-Cerinic 🗓️ May 17 @ 16.00 CEST 🖊️Registration is free and open at: 👉bit.ly/42N22HG #ERNReCONNET #diagnosis
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On @WHO's #WorldHealthDay, let's strive to "build a fairer, healthier world" by tackling health inequalities which includes rare diseases like scleroderma that are often overlooked. Together we can create a fairer world where patients can #BloomWithScleroderma @Fscleroderma
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NEW article by #ERNReCONNET "ERN ReCONNET points to consider for treating #patients living with autoimmune #rheumatic #diseases with antiviral therapies and anti-SARS-CoV-2 #antibody products" @clinexprheum doi.org/10.55563/clinexprheu… #COVID19 #patientcare #pointstoconsider
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Fesca retweeted
GILS@GILS_ODV13 Feb 2023
Sei paziente della sclerodermia e ritieni di non aver ricevuto abbastanza informazioni al momento della diagnosi? Fai sentire la tua voce! Completa il sondaggio di @Fscleroderma per contribuire a migliorare il percorso di cura 👉 bit.ly/3lt01js
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nature.com/articles/s41584-0… @nature_review GIT involvement in #scleroderma. Thanks to excellent collaboration with Dr McMahan, Kulkarni, Chen, Xavier, and Pasricha. @UMIntMed
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We’re speaking at the Europe Rare Disease Summit 2023 in #Madrid! We're on “The patient’s voice as a driver of access and drug approvals” panel session w/ leaders from the @Fscleroderma, @fhpatienteurope, European Dravet Syndrome Federation + @FranceNmo rarebeacon.org/news/were-spe…
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NEW article by #ERNReCONNET: "Exploring #patient’s experience and #unmetneeds on #pregnancy and #familyplanning in rare and complex #connectivetissue #diseases: a #narrativemedicine approach" doi.org/10.1136/rmdopen-2022…
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Do you live in the UK & have diffuse systemic sclerosis? Would you be interested in participating in a study which could inform a clinical trial of a new treatment? To find out more about Prof Richard Stratton's research project & how to be involved click: bit.ly/3EOqBti
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