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X-WR-CALDESC:Events for The Sumaira Foundation
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DTSTART;TZID=America/New_York:20251211T193000
DTEND;TZID=America/New_York:20251211T203000
DTSTAMP:20260414T113013
CREATED:20251129T161135Z
LAST-MODIFIED:20251205T142121Z
UID:20809-1765481400-1765485000@www.sumairafoundation.org
SUMMARY:Every Relapse Matters: The Evolving NMOSD & MOGAD Treatment Landscape in Canada
DESCRIPTION:The Sumaira Foundation Canada is pleased to invite you to an important educational webinar on Thursday\, December 11th at 7:30 PM EST. This session will explore the evolving treatment options for individuals living with AQP4+ NMOSD\, seronegative NMOSD\, and MOGAD in Canada. \nWe will be joined by Dr. Alexandra Muccilli from the University of Toronto\, who will provide an overview of current and emerging treatments for NMOSD and MOGAD and guidance on navigating care pathways in Canada. \nParticipants who join live will have the opportunity to engage directly with Dr. Muccilli during the real-time Q&A. This session will be recorded and made available for replay on TSF’s YouTube channel. \nThis program is made possible with support from Alexion and Amgen.
URL:https://www.sumairafoundation.org/event/every-relapse-matters-the-evolving-nmosd-mogad-treatment-landscape-in-canada/
LOCATION:Virtual: Canada\, Canada
CATEGORIES:From The Experts
ATTACH;FMTTYPE=image/png:https://www.sumairafoundation.org/wp-content/uploads/2025/11/Alexandra-Muccilli-1.png
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BEGIN:VEVENT
DTSTART;TZID=America/New_York:20251216T190000
DTEND;TZID=America/New_York:20251216T200000
DTSTAMP:20260414T113014
CREATED:20251113T164520Z
LAST-MODIFIED:20251113T164520Z
UID:20706-1765911600-1765915200@www.sumairafoundation.org
SUMMARY:Navigating Insurance Barriers as a Rare Disease Patient
DESCRIPTION:Patients living with rare conditions in the US frequently face extra complexities when seeking access to specialized treatments\, off-label therapies\, or less common care pathways. Prior authorizations may take longer\, documentation requirements may be more intensive\, and appeals may present additional hurdles. \nJoin us on December 16th at 7 PM EST for a special webinar curated specifically for the rare disease community to equip you with clarity\, practical steps\, and confidence to better navigate insurance processes. Our guest speaker\, Joe Touschner (Senior Policy Health Advisor\, National Association of Insurance Commissioners)\, will help demystify key aspects of the health insurance system that often present barriers for rare disease patients and also answer questions from our live audience. \n  \nWhat you’ll learn: \n\nThe basics of prior authorization\nHow to navigate health insurance appeals\nHow insurance rules vary by state and by plan type\, and why state insurance department resources matter.\nKey tools and resources for patients\n\nWho should attend: \n\nIndividuals living with a rare disease and their caregivers\nFamily members interested in advocacy\nPatient advocacy professionals\, case managers\, and support group leaders\nHealthcare professionals who support rare disease patients
URL:https://www.sumairafoundation.org/event/navigating-insurance-barriers-as-a-rare-disease-patient/
LOCATION:Virtual: United States\, United States
CATEGORIES:From The Experts
ATTACH;FMTTYPE=image/png:https://www.sumairafoundation.org/wp-content/uploads/2025/11/a1164bbf-cc55-45a9-93aa-7561e55aa54c.png
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BEGIN:VEVENT
DTSTART;TZID=Europe/Rome:20260127T203000
DTEND;TZID=Europe/Rome:20260127T213000
DTSTAMP:20260414T113014
CREATED:20260108T175644Z
LAST-MODIFIED:20260109T135048Z
UID:21028-1769545800-1769549400@www.sumairafoundation.org
SUMMARY:La terapia cannabinoide: l'importanza dell'informazione e del controllo medico
DESCRIPTION:Unisciti a noi il 27 gennaio per un webinar speciale dedicato alla terapia con cannabinoidi come opzione terapeutica valida e sicura per le malattie croniche.  \nSarà con noi Elisabetta Biavati\, donna che convive con atassia cerebellare e sindrome di Arnold Chiari\, in terapia con cannabis medica dal 2016. Elisabetta è un’attivista per i diritti delle persone in trattamento con cannabinoidi ed è stata Presidente di Associazione Pazienti Cannabis Medica Aps. \nDurante il webinar\, Elisabetta condividerà la sua esperienza personale e fornirà informazioni fondamentali per i pazienti\, tra cui: \n\nla differenza tra uso ricreativo e uso terapeutico basato su evidenze scientifiche\ni farmaci a base di cannabis prescrivibili secondo il Decreto Lorenzin (Legge 119/2017)\nla copertura delle prescrizioni da parte del Servizio Sanitario Nazionale\nl’importanza della supervisione medica e le interazioni con altre sostanze\ni possibili effetti collaterali della terapia con cannabinoidi\nl’importanza della formazione dei medici\n\nPartecipa a questo approfondimento: i partecipanti in diretta potranno porre domande a Elisabetta in tempo reale. Il webinar sarà registrato e reso disponibile in replay. \nQuesto programma è reso possibile grazie al supporto di Amgen e Alexion.
URL:https://www.sumairafoundation.org/event/la-terapia-cannabinoide-limportanza-dellinformazione-e-del-controllo-medico/
LOCATION:Virtual: Italy\, Italy
CATEGORIES:From The Experts,TSF Webinar
ATTACH;FMTTYPE=image/png:https://www.sumairafoundation.org/wp-content/uploads/2026/01/Veronique-Carrette.png
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BEGIN:VEVENT
DTSTART;TZID=America/Mexico_City:20260221T100000
DTEND;TZID=America/Mexico_City:20260221T110000
DTSTAMP:20260414T113014
CREATED:20260128T163248Z
LAST-MODIFIED:20260128T163248Z
UID:21169-1771668000-1771671600@www.sumairafoundation.org
SUMMARY:Generalidades de Encefalitis Autoinmune
DESCRIPTION:Con motivo del Día Mundial de la Encefalitis 2026\, nos complace contar con la participación de la Dra. Nicole Somerville Briones\, quien ofrecerá una visión general de la encefalitis autoinmune y abordará aspectos clave como el diagnóstico\, el manejo de los síntomas\, los tratamientos y más. Acompáñanos el 21 de febrero para una conversación dinámica. Quienes se conecten en directo podrán hacer preguntas a la Dra. Somerville en tiempo real. \nNicole Somerville Briones es médica cirujana de la Universidad Anáhuac (México) con Master en Neurociencias (MSc Brain and Mind Sciences) en el Queen Square Institute of Neurology\, parte de University College London\, en el Reino Unido. Participó en un proyecto de investigación sobre Encefalitis Autoinmune. \nPara registrarte\, visita: https://us02web.zoom.us/webinar/register/WN_xFgbNRGVTFitJ87rp1M6bQ
URL:https://www.sumairafoundation.org/event/generalidades-de-encefalitis-autoinmune/
LOCATION:Virtual: Mexico
CATEGORIES:From The Experts
ATTACH;FMTTYPE=image/png:https://www.sumairafoundation.org/wp-content/uploads/2026/01/Nicole-Somerville-Briones.png
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BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260324T130000
DTEND;TZID=America/New_York:20260324T140000
DTSTAMP:20260414T113014
CREATED:20260302T162110Z
LAST-MODIFIED:20260304T101921Z
UID:21398-1774357200-1774360800@www.sumairafoundation.org
SUMMARY:Terapie per la NMOSD in Italia
DESCRIPTION:In soli cinque anni\, la comunità NMOSD è passata da zero terapie approvate a quattro — un traguardo straordinario\, soprattutto considerando che solo circa il 5% delle malattie rare dispone di una terapia approvata. \nUnitevi a noi il 24 marzo: saremo in compagnia del Dr. Raffaele Iorio\, neuroimmunologo di Roma\, che presenterà una panoramica delle terapie per la NMOSD disponibili in Italia e illustrerà i principali progressi degli ultimi cinque anni\, seguita da una sessione di domande e risposte. https://us02web.zoom.us/webinar/register/WN_-pGC67FzTAqv8u9FRZGbWw \nIl webinar sarà registrato e reso disponibile per la visione successiva. \nQuesto programma educativo è stato realizzato con il supporto di Amgen. \n 
URL:https://www.sumairafoundation.org/event/terapie-per-la-nmosd-in-italia/
LOCATION:Virtual: Italy\, Italy
CATEGORIES:From The Experts
ATTACH;FMTTYPE=image/png:https://www.sumairafoundation.org/wp-content/uploads/2026/03/Raffaele-Iorio-1.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260326T190000
DTEND;TZID=America/New_York:20260326T200000
DTSTAMP:20260414T113014
CREATED:20260302T170945Z
LAST-MODIFIED:20260313T133840Z
UID:21404-1774551600-1774555200@www.sumairafoundation.org
SUMMARY:Real-World Efficacy & Safety of NMOSD Treatments
DESCRIPTION:A recent study\, “Real‑World Efficacy and Safety of Neuromyelitis Optica Spectrum Disorder Disease‑Modifying Treatments\,” showed that in routine practice\, approved NMOSD therapies reduce relapse rates and offer better safety than older treatments\, reinforcing their value for patients. (Read the article here: https://pubmed.ncbi.nlm.nih.gov/41494145/) \nTo mark NMO Awareness Month 2026\, we’ll be joined by Dr. Shamik Bhattacharyya\, a lead author of this study\, who will discuss the benefits of FDA-approved NMOSD therapies versus non-approved first-line treatments. \nJoin us on Thursday\, March 26th at 4 PM PST / 7 PM EST. Attendees joining live will have the opportunity to participate in the live Q&A. \nThe webinar will be recorded and available for replay. Registration is required. \nThis educational program is made possible with support from Amgen and Alexion.
URL:https://www.sumairafoundation.org/event/real-world-efficacy-safety-of-nmosd-treatments/
LOCATION:Virtual: United States\, United States
CATEGORIES:From The Experts
ATTACH;FMTTYPE=image/png:https://www.sumairafoundation.org/wp-content/uploads/2026/03/Shamik-Bhattacharya.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Rome:20260402T180000
DTEND;TZID=Europe/Rome:20260402T190000
DTSTAMP:20260414T113014
CREATED:20260317T185158Z
LAST-MODIFIED:20260317T185158Z
UID:21499-1775152800-1775156400@www.sumairafoundation.org
SUMMARY:Comprendere l’anticorpo AQP4 nella NMOSD
DESCRIPTION:L’AQP4 (Aquaporina-4) è una proteina presente nel cervello\, nel midollo spinale e nei nervi ottici che aiuta a regolare il movimento dell’acqua dentro e fuori dalle cellule. Nella NMOSD\, il sistema immunitario attacca per errore l’AQP4. Questo attacco può causare infiammazione nel midollo spinale e nei nervi ottici\, portando a sintomi come alterazioni della vista\, debolezza o intorpidimento. \nUnisciti a noi giovedì 2 aprile alle 18:00 (CET) per una presentazione e discussione approfondita sull’AQP4\, guidata dalla Dott.ssa Sara Mariotto\, neuroimmunologa presso l’Università di Verona. \nI partecipanti collegati in diretta avranno l’opportunità di porre domande alla Dott.ssa Mariotto in tempo reale. È richiesta la registrazione. https://us02web.zoom.us/webinar/register/WN_CDm8SEe2Rmea8yjKnZqVGg \nQuesto programma è reso possibile grazie al supporto di Amgen e Alexion.
URL:https://www.sumairafoundation.org/event/comprendere-lanticorpo-aqp4-nella-nmosd/
LOCATION:Virtual: Italy\, Italy
CATEGORIES:From The Experts
ATTACH;FMTTYPE=image/png:https://www.sumairafoundation.org/wp-content/uploads/2026/03/Sara-Mariotto.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Rome:20260429T200000
DTEND;TZID=Europe/Rome:20260429T210000
DTSTAMP:20260414T113014
CREATED:20260403T173821Z
LAST-MODIFIED:20260403T173821Z
UID:21645-1777492800-1777496400@www.sumairafoundation.org
SUMMARY:Per orientarsi: cognizione e sviluppo in pazienti pediatrici con MOGAD e NMOSD
DESCRIPTION:Il tuo bambino ha ricevuto una diagnosi di NMOSD o MOGAD? Ti stai chiedendo come la diagnosi potrebbe influire sul suo sviluppo cognitivo? \nUnisciti a noi martedì 29 aprile alle ore 20:00 CET per un webinar speciale con il Dott. Alberto Cossu\, neuropsichiatra infantile presso l’Azienda Ospedaliera Universitaria Integrata di Verona\, che approfondirà il rapporto tra cognizione e malattie neuroimmuni rare nei bambini.  https://us02web.zoom.us/webinar/register/WN_Q8_tN9ruSSCsezuPnDiixQ  \nIl Dott. Cossu condividerà la sua esperienza e sarà disponibile a rispondere alle vostre domande in tempo reale durante la sessione dal vivo. Il webinar sarà moderato da Viviana e Alice\, entrambe mamme di bambini con MOGAD. \nNon perdete questa opportunità di confrontarvi con un esperto e di entrare in contatto con una comunità che comprende il vostro percorso. \nQuesto programma è reso possibile grazie al supporto di Amgen e Alexion
URL:https://www.sumairafoundation.org/event/per-orientarsi-cognizione-e-sviluppo-in-pazienti-pediatrici-con-mogad-e-nmosd/
LOCATION:Virtual: Italy\, Italy
CATEGORIES:From The Experts
ATTACH;FMTTYPE=image/jpeg:https://www.sumairafoundation.org/wp-content/uploads/2026/04/Alberto-Cossu.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260429T200000
DTEND;TZID=America/New_York:20260429T210000
DTSTAMP:20260414T113014
CREATED:20260403T184548Z
LAST-MODIFIED:20260403T184548Z
UID:21648-1777492800-1777496400@www.sumairafoundation.org
SUMMARY:Viviendo con NMOSD en América Latina: Desafíos y barreras en Argentina\, Colombia y México
DESCRIPTION:¿Tú o un ser querido viven con NMOSD en Latinoamérica? Únete al equipo de LatAm de The Sumaira Foundation para un webinar especial dedicado a explorar los desafíos únicos que enfrentan los pacientes con NMOSD en Argentina\, Colombia y México. \nEste webinar en español reunirá a destacados neurólogos de los tres países para analizar la realidad del diagnóstico de NMOSD en la región\, incluyendo las tasas de incidencia en comparación con los datos globales\, el proceso diagnóstico y las barreras que con demasiada frecuencia retrasan un diagnóstico oportuno. \nPonentes Destacados: \n\nDra. Maria Eugenia Balbuena (Argentina)\nDr. Luis Alfonso Zarco (Colombia)\nDr. Jose Flores-Rivera (México)\n\nTambién escucharás un poderoso testimonio de primera mano de una Embajadora de NMOSD de TSF en México\, quien compartirá su experiencia personal en el camino hacia el diagnóstico. El webinar cerrará con una sesión abierta de preguntas y respuestas de 25 minutos\, brindando a los asistentes la oportunidad de hacer preguntas a nuestro panel de expertos en tiempo real. \nFecha: Martes\, 29 de abril de 2025 (90 minutos) \nHorarios Locales: \n\n🇲🇽 México: 7:00 PM CST\n🇨🇴 Colombia: 8:00 PM COT\n🇦🇷 Argentina: 10:00 PM ART\n\nhttps://us02web.zoom.us/webinar/register/WN_ODczM1smTO2YdIBfXGZ7iA  \nYa seas paciente\, cuidador o profesional de la salud\, este webinar es una oportunidad para obtener información valiosa sobre el estado de la atención del NMOSD en Latinoamérica y para conectar con una comunidad que trabaja para derribar barreras y mejorar los resultados para todos.
URL:https://www.sumairafoundation.org/event/viviendo-con-nmosd-en-america-latina-desafios-y-barreras-en-argentina-colombia-y-mexico/
LOCATION:Virtual: Colombia\, Colombia
CATEGORIES:From The Experts
ATTACH;FMTTYPE=image/jpeg:https://www.sumairafoundation.org/wp-content/uploads/2026/04/LatAm_April-2026.jpg
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