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DTSTART;TZID=America/New_York:20260528T210000
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UID:21974-1780002000-1780005600@www.sumairafoundation.org
SUMMARY:When to Call Your Neurologist & What to Say: Advice from a Neurologist
DESCRIPTION:Not sure your neurologist needs to hear from you? Or what to say when you reach out? You’re not alone. \nJoin us on Thursday\, May 28 at 6 PM PT / 9 PM ET for a practical\, patient-friendly webinar with Dr. Stacey Clardy\, a leading neurologist\, who will walk through when it’s important to contact your care team\, how to clearly communicate your symptoms\, and how to advocate for the care you deserve. \nWhether you’re newly diagnosed or have been managing your condition for years\, this session will offer guidance to help you feel more confident navigating conversations with your neurologist. \nThose who attend live will have the opportunity to ask questions. \nMade possible with support from Amgen.
URL:https://www.sumairafoundation.org/event/when-to-call-your-neurologist-what-to-say-advice-from-a-neurologist/
LOCATION:Virtual: Global
CATEGORIES:From The Experts,TSF Webinar
ATTACH;FMTTYPE=image/png:https://www.sumairafoundation.org/wp-content/uploads/2026/05/Stacey-Clardy.png
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BEGIN:VEVENT
DTSTART;TZID=Europe/Rome:20260603T180000
DTEND;TZID=Europe/Rome:20260603T190000
DTSTAMP:20260522T132925
CREATED:20260515T160832Z
LAST-MODIFIED:20260518T192702Z
UID:22085-1780509600-1780513200@www.sumairafoundation.org
SUMMARY:Salute Mentale e Malattie Rare: Strategie Per il Benessere Quotidiano
DESCRIPTION:Unisciti a noi il 3 giugno alle ore 18:00 CET per un webinar dedicato al tema ‘Salute Mentale e Malattie Rare: Strategie per il Benessere Quotidiano’\, con la partecipazione della Dott.ssa Emanuela Stoppele dell’Università di Verona. https://us02web.zoom.us/webinar/register/WN_HiLsvF5DR66ArBAK3WkDPw  \nVivere con una malattia rara può avere un impatto profondo sulla vita quotidiana — dal punto di vista emotivo\, fisico e sociale — sia per i pazienti che per i caregiver. Durante questo incontro\, la Dott.ssa Stoppele approfondirà il legame tra salute mentale e malattia cronica\, offrendo strategie pratiche per rafforzare la resilienza emotiva\, gestire lo stress\, migliorare la comunicazione e promuovere il benessere generale. \nPensato per pazienti\, familiari e caregiver coinvolti nelle malattie neuroimmuni rare e correlate\, il webinar offrirà uno spazio di confronto e supporto per comprendere meglio le sfide psicologiche legate a queste condizioni complesse e l’importanza di un approccio di cura globale e integrato. \nL’evento è aperto a pazienti\, caregiver\, professionisti sanitari e sostenitori della comunità delle malattie rare. \nQuesto programma è stato reso possibile grazie al supporto di Amgen e Alexion.
URL:https://www.sumairafoundation.org/event/salute-mentale-e-malattie-rare-strategie-per-il-benessere-quotidiano/
LOCATION:Virtual: Italy\, Italy
CATEGORIES:From The Experts
ATTACH;FMTTYPE=image/png:https://www.sumairafoundation.org/wp-content/uploads/2026/05/Emanuela-Stoppele.png
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DTSTART;TZID=America/New_York:20260608T200000
DTEND;TZID=America/New_York:20260608T210000
DTSTAMP:20260522T132925
CREATED:20260508T200046Z
LAST-MODIFIED:20260512T210111Z
UID:21994-1780948800-1780952400@www.sumairafoundation.org
SUMMARY:Understanding Step Therapy: How Insurance Decisions Shape Neuroimmune Treatment
DESCRIPTION:Understanding insurance coverage can be overwhelming\, especially when treatment decisions are impacted by policies like step therapy. Join us Monday\, June 8 at 5:00 PM PT / 8:00 PM ET for an important conversation with Dr. Rosemarie Walch about how insurance requirements can influence access to care for people living with rare neuroimmune disorders. \nIn this webinar\, Understanding Step Therapy: How Insurance Decisions Shape Neuroimmune Treatment\, Dr. Walch will explain what step therapy is\, why it exists\, and how it can affect treatment timelines\, medication access\, and patient outcomes. Attendees will also learn practical strategies for navigating insurance barriers\, advocating for appropriate care\, and working with their healthcare teams throughout the process. \nThose who attend live will have the opportunity to ask questions during the session. \nMade possible with support from Amgen.
URL:https://www.sumairafoundation.org/event/understanding-step-therapy-how-insurance-decisions-shape-neuroimmune-treatment/
LOCATION:Virtual: Global
CATEGORIES:From The Experts,TSF Webinar
ATTACH;FMTTYPE=image/png:https://www.sumairafoundation.org/wp-content/uploads/2026/05/Rosemarie-Walch_SA-EDITS.png
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BEGIN:VEVENT
DTSTART;TZID=Europe/Rome:20260609T190000
DTEND;TZID=Europe/Rome:20260609T200000
DTSTAMP:20260522T132925
CREATED:20260519T123440Z
LAST-MODIFIED:20260519T123440Z
UID:22128-1781031600-1781035200@www.sumairafoundation.org
SUMMARY:Risonanza magnetica e NMOSD: quando serve\, cosa può mostrare e perché è importante
DESCRIPTION:Unisciti a noi per un’importante discussione\, “Risonanza magnetica e NMOSD: quando è necessaria\, cosa può mostrare e perché è importante”\, con la partecipazione della Dott.ssa Rosanna Cortese\, neurologa e ricercatrice\, il 9 giugno alle ore 19:00 CET. https://us02web.zoom.us/webinar/register/WN_hBD6r4NWSP-8e6dLtPq2vA  \nLa risonanza magnetica (MRI) svolge un ruolo fondamentale nella diagnosi e nel monitoraggio dell’NMOSD\, ma molti pazienti e caregiver hanno ancora domande su quando sia necessaria\, cosa osservano i medici e in che modo le immagini influenzino le decisioni terapeutiche. In questo webinar\, la Dott.ssa Cortese spiegherà questi importanti argomenti in modo chiaro\, accessibile e facile da comprendere per pazienti\, caregiver e famiglie. \nGli argomenti includeranno: \n\n Quando viene utilizzata la risonanza magnetica nell’NMOSD\n Cosa possono mostrare le scansioni MRI del cervello\, dei nervi ottici e del midollo spinale\n Come i risultati della MRI aiutano a guidare diagnosi e trattamento\n Domande frequenti e falsi miti sulla diagnostica per immagini nell’NMOSD\n\nI partecipanti collegati in diretta avranno l’opportunità di porre domande durante una sessione interattiva di domande e risposte. \nChe tu abbia ricevuto una diagnosi da poco\, conviva con l’NMOSD da anni o stia supportando una persona cara\, questo webinar ha l’obiettivo di offrire alla comunità maggiore conoscenza e chiarezza su un aspetto importante della cura. \nQuesto programma è stato reso possibile grazie al supporto di Amgen e Alexion.
URL:https://www.sumairafoundation.org/event/risonanza-magnetica-e-nmosd-quando-serve-cosa-puo-mostrare-e-perche-e-importante/
LOCATION:Virtual: Italy\, Italy
CATEGORIES:From The Experts,TSF Webinar
ATTACH;FMTTYPE=image/png:https://www.sumairafoundation.org/wp-content/uploads/2026/05/Rosa-Cortese.png
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DTSTART;TZID=America/New_York:20260617T170000
DTEND;TZID=America/New_York:20260617T180000
DTSTAMP:20260522T132925
CREATED:20260430T020951Z
LAST-MODIFIED:20260430T155142Z
UID:21882-1781715600-1781719200@www.sumairafoundation.org
SUMMARY:CAR-T: What Does This Mean for Rare Neuroimmune Disorders?
DESCRIPTION:You’ve likely heard about CAR-T but do you know what it is and what it means for those living with rare neuroimmune disorders? \nJoin us on June 17th at 5:00 PM EST for an informative and patient-friendly webinar featuring Dr. Michael Levy and Dr. Marcela Maus\, experts from Massachusetts General Hospital/Harvard Medical School\, who will break down this complex treatment approach in a way that’s easy to understand. During this time\, our expert speakers will educate our live audience about what CAR-T is\, how it works and why researchers are hopeful about its potential in conditions like NMOSD\, MOGAD\, and beyond. \nWhether you’re newly diagnosed\, living with a condition\, or supporting a loved one\, this session is designed to empower you with knowledge\, clarity and hope for the future of this breakthrough treatment. \n\nAttendees who join live will also have the opportunity to ask questions directly to the experts during the Q&A portion. This webinar will be recorded and made available for replay on TSF’s YouTube channel. \nThis program was made possible with support from Amgen.
URL:https://www.sumairafoundation.org/event/webinar-car-t-what-does-this-mean-for-rare-neuroimmune-disorders/
LOCATION:Virtual: Global
CATEGORIES:From The Experts,TSF Webinar
ATTACH;FMTTYPE=image/png:https://www.sumairafoundation.org/wp-content/uploads/2026/04/Michael-Levy-Marcela-Maus.png
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