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DTSTART;TZID=Europe/Rome:20251122T123000
DTEND;TZID=Europe/Rome:20251122T193000
DTSTAMP:20260403T194457
CREATED:20250923T185141Z
LAST-MODIFIED:20251014T165913Z
UID:20228-1763814600-1763839800@www.sumairafoundation.org
SUMMARY:3° Giornata dedicata da malattie neuroimmunologiche rare - Roma
DESCRIPTION:TSF Italia è lieta di invitare tutti i pazienti italiani affetti da encefalite autoimmune\, miastenia grave\, MOGAD e NMOSD\, i loro caregiver e i medici interessati a queste patologie a partecipare a questa giornata di formazione\, convivialità e divertimento. \nIn collaborazione con il Dott. Raffaele Iorio del Policlinico Universitario Agostino Gemelli e in partnership con l’Associazione Italiana Miastenia (AIM)\, TSF Italia è lieta di invitarvi alla 3° Giornata dedicata a pazienti\, caregiver e medici. \n\n\nQuesto evento a libera iscrizione vi permetterà di: \n\nIncontrare pazienti italiani \, i loro caregivers ed i clinici esperti di queste patologie\nPorre domande agli esperti in diretta relative alla gestione dei sintomi\, le terapie\, le comorbidità e molto altro\nAggiornarvi in merito alle ultime ricerche scientifiche con l’aiuto di medici esperti italiani\nFare rete e instaurare connessioni con la comunità locale\n\nL’evento è gratuito e il pranzo sarà offerto da noi.
URL:https://www.sumairafoundation.org/event/3-giornata-dedicata-da-malattie-neuroimmunologiche-rare-roma/
LOCATION:Nazionale Spazio Eventi (Roma)\, Via Palermo\, 10\, Roma\, 00184\, Italy
CATEGORIES:Patient Days
ATTACH;FMTTYPE=image/png:https://www.sumairafoundation.org/wp-content/uploads/2025/09/Rome-Patient-Day-2025-1.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20251027T200000
DTEND;TZID=America/New_York:20251027T210000
DTSTAMP:20260403T194457
CREATED:20251008T180110Z
LAST-MODIFIED:20251008T180110Z
UID:20297-1761595200-1761598800@www.sumairafoundation.org
SUMMARY:Human Collective Project | Mental Health Mondays
DESCRIPTION:The Mental Health Monday meetings began as a way to address the various mental and emotional concerns that individuals experience when dealing with rare neuroimmune diseases. Patients\, caregivers\, and loved ones ride the rollercoaster of feelings throughout their daily lives\, from the moment of symptom onset. Often\, getting the proper diagnosis is a journey of its own\, and dealing with life’s difficulties after that can include stressors that only others in your situation may understand. These meetings will offer a safe space for people to come together\, share their stories\, and highlight how they are coping with everyday challenges. We will discuss a range of mental health topics and have occasional special guest speakers join our meetings. So\, whether you are newly diagnosed or a seasoned zebra\, we hope to provide a space to help guide personal growth.
URL:https://www.sumairafoundation.org/event/human-collective-project-mental-health-mondays/
LOCATION:Virtual: United States\, United States
CATEGORIES:Support Group
ATTACH;FMTTYPE=image/png:https://www.sumairafoundation.org/wp-content/uploads/2025/10/HCP-Master-169-Facebook-Cover-3.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Paris:20251129T130000
DTEND;TZID=Europe/Paris:20251130T130000
DTSTAMP:20260403T194457
CREATED:20250915T142820Z
LAST-MODIFIED:20250915T142820Z
UID:20188-1764421200-1764507600@www.sumairafoundation.org
SUMMARY:3ème week-end Patients et Aidants NMOSD & MOGAD - Lyon
DESCRIPTION:TSF France\, en partenariat avec le MIRCEM\, présente le 3ème week-end Patients et Aidants de la NMOSD et de la MOGAD les 29 et 30 novembre à Lyon ! \nL’évènement\, complétement gratuit\, aura lieu au Mama Shelter de Lyon\, rue Domer\, les 29 et 30 novembre 2025. \nNous sommes ravis d’être accompagnés par les experts du MIRCEM et de nombreux autres intervenants qui nous rejoignent pour ces deux journées d’information. \nVenez rencontrer les acteurs de la NMOSD et la MOGAD\, suivre nos ateliers mais surtout échanger avec d’autres Patients et Aidants qui vivent la même chose que vous. \nVenez mettre en lumière la NMOSD et la MOGAD avec TSF France. \nÀ bientôt! \nL’équipe TSF France (Anass\, Bérengère\, Claire\, Elodie\, Emma\, Fatiha\, Nassima\, Natasha\, Nelly et Selma) \nEnvoyez vos questions à: Berengere@sumairafoundation.org ou guillaume@sumairafoundation.org \nAccès par le métro Station Jean MACE – Parking public à proximité
URL:https://www.sumairafoundation.org/event/3eme-week-end-patients-et-aidants-nmosd-mogad-lyon/
LOCATION:Mama Shelter Lyon\, 13 Rue Domer\, Lyon\, 69007\, France
CATEGORIES:TSF France,TSF Patient Day
ATTACH;FMTTYPE=image/jpeg:https://www.sumairafoundation.org/wp-content/uploads/2025/09/https-cdn.evbuc_.com-images-1121221683-132744545551-1-original.20250911-144625.jpeg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20251211T193000
DTEND;TZID=America/New_York:20251211T203000
DTSTAMP:20260403T194457
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
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20251214T110000
DTEND;TZID=America/New_York:20251214T120000
DTSTAMP:20260403T194457
CREATED:20251204T203122Z
LAST-MODIFIED:20251204T203122Z
UID:20827-1765710000-1765713600@www.sumairafoundation.org
SUMMARY:TSF HCP Caregivers
DESCRIPTION:The Caregivers Human Collective Project (HCP) is a groundbreaking support group hosted by The Sumaira Foundation\, created specifically for caregivers of individuals living with rare neuroimmune diseases like NMOSD and MOGAD. This first-of-its-kind session offers a safe\, inclusive space for family members\, partners\, siblings\, children\, and loved ones to connect\, share\, and be heard. Led by our dedicated Caregiver Ambassadors\, who bring their own lived experience and empathy to the conversation\, participants can expect heartfelt conversations\, mutual support\, and practical insights into the caregiving journey. Whether you’re navigating the emotional\, physical\, or logistical challenges of caregiving\, this group is designed to uplift and empower you through community\, compassion\, and connection.
URL:https://www.sumairafoundation.org/event/tsf-hcp-caregivers/
LOCATION:Virtual: Global
CATEGORIES:Support Group
ATTACH;FMTTYPE=image/jpeg:https://www.sumairafoundation.org/wp-content/uploads/2025/12/HCP-Caregiver-Visual.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20251216T190000
DTEND;TZID=America/New_York:20251216T200000
DTSTAMP:20260403T194457
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
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Bogota:20251216T190000
DTEND;TZID=America/Bogota:20251216T200000
DTSTAMP:20260403T194458
CREATED:20251204T201141Z
LAST-MODIFIED:20251204T201141Z
UID:20824-1765911600-1765915200@www.sumairafoundation.org
SUMMARY:Grupo de Apoyo + Charla Enfocado en Salud Mental
DESCRIPTION:En compañía de una psicóloga\, una neurologa (ambas embajadores de TSF) y un psiquiatra\, trataremos temas enfocados en salud mental. Una parte muy importante pero a veces ignorada por pacientes y cuidadores\, del tratamiento integral que necesitan los pacientes de enfermedades neuroinmunes raras.
URL:https://www.sumairafoundation.org/event/grupo-de-apoyo-charla-enfocado-en-salud-mental/
LOCATION:Virtual: Colombia\, Colombia
CATEGORIES:Support Group
ATTACH;FMTTYPE=image/png:https://www.sumairafoundation.org/wp-content/uploads/2025/12/2_20251202_103204_0001.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Istanbul:20251223T160000
DTEND;TZID=Europe/Istanbul:20251223T170000
DTSTAMP:20260403T194458
CREATED:20251210T204842Z
LAST-MODIFIED:20251210T204842Z
UID:20857-1766505600-1766509200@www.sumairafoundation.org
SUMMARY:MOGAD Hakkında Güncel Gelişmeler ve Tedaviler
DESCRIPTION:Siz veya sevdiğiniz biri MOG antikor hastalığından etkileniyor mu? \n23 Aralık Salı günü saat 16:00’da MOGAD’a özel bir web seminerine katılmanızı rica ediyoruz. Prof. Dr. Murat Kürtüncü\, Prof. Dr. Murat Terzi ve Prof. Dr. Emine Rabia Koç\, MOG antikor hastalığı\, klinik çalışmalar ve hastaların gelecekteki tedavi seçenekleri için MOG ile ilgili klinik çalışmalara nasıl katılabilecekleri hakkında genel bir bakış sunacak. \nCanlı olarak katılan katılımcılar\, uzmanlara gerçek zamanlı olarak soru sorma fırsatına sahip olacaklar. Bu web semineri kaydedilecek ve TSF’nin YouTube kanalında tekrar izlenebilecek. \nBu program\, UCB’nin desteğiyle mümkün olmuştur.
URL:https://www.sumairafoundation.org/event/mogad-hakkinda-guncel-gelismeler-ve-tedaviler/
LOCATION:virtual: Turkey\, Turkey
CATEGORIES:Understanding MOGAD
ATTACH;FMTTYPE=image/jpeg:https://www.sumairafoundation.org/wp-content/uploads/2025/12/TURKISH.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20251229T200000
DTEND;TZID=America/New_York:20251229T210000
DTSTAMP:20260403T194458
CREATED:20251220T000651Z
LAST-MODIFIED:20251220T145820Z
UID:20886-1767038400-1767042000@www.sumairafoundation.org
SUMMARY:Human Collective Project | Mental Health Mondays
DESCRIPTION:The Mental Health Monday meetings began as a way to address the various mental and emotional concerns that individuals experience when dealing with rare neuroimmune diseases. Patients\, caregivers\, and loved ones ride the rollercoaster of feelings throughout their daily lives\, from the moment of symptom onset. Often\, getting the proper diagnosis is a journey of its own\, and dealing with life’s difficulties after that can include stressors that only others in your situation may understand. These meetings will offer a safe space for people to come together\, share their stories\, and highlight how they are coping with everyday challenges. We will discuss a range of mental health topics and have occasional special guest speakers join our meetings. So\, whether you are newly diagnosed or a seasoned zebra\, we hope to provide a space to help guide personal growth.
URL:https://www.sumairafoundation.org/event/human-collective-project-mental-health-mondays-2/
LOCATION:Virtual: United States\, United States
CATEGORIES:Support Group
ATTACH;FMTTYPE=image/png:https://www.sumairafoundation.org/wp-content/uploads/2025/10/HCP-Master-169-Facebook-Cover-3.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260111T110000
DTEND;TZID=America/New_York:20260111T120000
DTSTAMP:20260403T194458
CREATED:20260103T205601Z
LAST-MODIFIED:20260107T192746Z
UID:20969-1768129200-1768132800@www.sumairafoundation.org
SUMMARY:TSF HCP Caregivers: Becoming a Resilient Caregiver
DESCRIPTION:The Caregivers Human Collective Project (HCP) is a groundbreaking support group hosted by The Sumaira Foundation\, created specifically for caregivers of individuals living with rare neuroimmune diseases like NMOSD and MOGAD. This first-of-its-kind session offers a safe\, inclusive space for family members\, partners\, siblings\, children\, and loved ones to connect\, share\, and be heard. Led by our dedicated Caregiver Ambassadors\, who bring their own lived experience and empathy to the conversation\, participants can expect heartfelt conversations\, mutual support\, and practical insights into the caregiving journey. Whether you’re navigating the emotional\, physical\, or logistical challenges of caregiving\, this group is designed to uplift and empower you through community\, compassion\, and connection.
URL:https://www.sumairafoundation.org/event/tsf-hcp-caregivers-becoming-a-resilient-caregiver/
LOCATION:Virtual: Global
CATEGORIES:Support Group
ATTACH;FMTTYPE=image/jpeg:https://www.sumairafoundation.org/wp-content/uploads/2026/01/HCP-Caregiver-Visual-.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260115T200000
DTEND;TZID=America/New_York:20260115T210000
DTSTAMP:20260403T194458
CREATED:20260112T151551Z
LAST-MODIFIED:20260112T151849Z
UID:21047-1768507200-1768510800@www.sumairafoundation.org
SUMMARY:TSF's Human Collective Project Meetings
DESCRIPTION:The Human Collective Project (HCP) is TSF’s support group meeting offered to anyone who has been affected/impacted by NMOSD/MOGAD. The program came into existence during the height of the COVID-19 pandemic in 2020\, when most NMOSD/MOGAD felt particularly isolated and vulnerable to the coronavirus as immunosuppressed/immunocompromised members of society. The isolation many of us experienced unveiled a great need and opportunity for us to connect in a meaningful way to offer our support to one another. Since 2020\, we have expanded the program to offer more sessions in multiple geographies to ensure that everyone in the NMOSD/MOGAD communities feels welcomed and included. As we always say\, HCP is a great way to meet others in similar circumstances in this rare community; it is a safe space to laugh\, cry\, vent\, share wins\, etc. This program is driven and led by TSF Patient and Caregiver Ambassadors worldwide.
URL:https://www.sumairafoundation.org/event/tsfs-human-collective-project-meetings-48/
LOCATION:Virtual: Global
CATEGORIES:Support Group
ATTACH;FMTTYPE=image/jpeg:https://www.sumairafoundation.org/wp-content/uploads/2026/01/580539276_814407297887099_8833406591562928552_n.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Bogota:20260119T000000
DTEND;TZID=America/Bogota:20260119T170000
DTSTAMP:20260403T194458
CREATED:20251220T001931Z
LAST-MODIFIED:20251220T001931Z
UID:20888-1768780800-1768842000@www.sumairafoundation.org
SUMMARY:Grupo de apoyo enfocado en Cuidadores
DESCRIPTION:Los cuidadores de pacientes con enfermedades neuroinmunes como NMOSD\, MOGAD\, etc.. también necesitan un espacio para expresar sus sentimientos y emociones. Este espacio es para los cuidadores y será dirigido por Ingrid : Embajadora de TSF y paciente NMOSD y su esposo y cuidador Juan Pablo.
URL:https://www.sumairafoundation.org/event/grupo-de-apoyo-enfocado-en-cuidadores/
LOCATION:Virtual: Colombia\, Colombia
CATEGORIES:Support Group
ATTACH;FMTTYPE=image/png:https://www.sumairafoundation.org/wp-content/uploads/2025/12/3675.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260124T100000
DTEND;TZID=America/New_York:20260124T170000
DTSTAMP:20260403T194458
CREATED:20251218T173459Z
LAST-MODIFIED:20260108T173335Z
UID:20879-1769248800-1769274000@www.sumairafoundation.org
SUMMARY:Día del Paciente para Trastornos Neuroinflamatorios Raros - Puerto Rico
DESCRIPTION:¡TSF llega a Puerto Rico el sábado 24 de enero 2026! \nInvitamos a pacientes\, cuidadores\, médicos\, enfermeros\, investigadores y defensores de los pacientes a unirse a nosotros en un día especial dedicado a los trastornos neuroinflamatorios raros. Si usted o un ser querido se ven afectados por alguno de los trastornos que se enumeran a continuación: \n¡Esperamos verlos allí! \n\nEncefalitis autoinmune (EA)\nMOGAD\nNeurosarcoidosis\nNMOSD\nSíndrome de la persona rígida\n\nÚnase a nosotros para un día de aprendizaje\, comunidad y diversión: \n\nPodran conocer a pacientes\, cuidadores y profesionales de la salud de todo Puerto Rico.\nHaga preguntas a expertos en tiempo real sobre el manejo de los síntomas\, tratamientos y terapias\, comorbilidades y mucho más.\nInfórmese sobre las últimas investigaciones y descubrimientos de la mano de expertos.\n\nEste evento se organiza en colaboración con el Dr. José Ávila y la Dra. Patricia De Jesús del Centro de Esclerosis Múltiple de Puerto Rico. La inscripción es gratuita y se servirá almuerzo. \n¡Tenemos muchas ganas de verlos en Puerto Rico! \nLa Fundación Sumaira
URL:https://www.sumairafoundation.org/event/dia-del-paciente-para-trastornos-neuroinflamatorios-raros-puerto-rico/
LOCATION:Hyatt Centric San Juan – Isla Verde\, 8020 José M. Tartak Ave\, Carolina\, Puerto Rico\, 00979\, United States Minor Outlying Islands
CATEGORIES:Community Event,TSF Patient Day
ATTACH;FMTTYPE=image/png:https://www.sumairafoundation.org/wp-content/uploads/2025/12/Puerto-Rico-Patient-Day-2026-1.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260126T200000
DTEND;TZID=America/New_York:20260126T210000
DTSTAMP:20260403T194458
CREATED:20260126T221135Z
LAST-MODIFIED:20260126T221135Z
UID:21137-1769457600-1769461200@www.sumairafoundation.org
SUMMARY:Human Collective Project | Mental Health Mondays
DESCRIPTION:The Mental Health Monday meetings began as a way to address the various mental and emotional concerns that individuals experience when dealing with rare neuroimmune diseases. Patients\, caregivers\, and loved ones ride the rollercoaster of feelings throughout their daily lives\, from the moment of symptom onset. Often\, getting the proper diagnosis is a journey of its own\, and dealing with life’s difficulties after that can include stressors that only others in your situation may understand. These meetings will offer a safe space for people to come together\, share their stories\, and highlight how they are coping with everyday challenges. We will discuss a range of mental health topics and have occasional special guest speakers join our meetings. So\, whether you are newly diagnosed or a seasoned zebra\, we hope to provide a space to help guide personal growth.
URL:https://www.sumairafoundation.org/event/human-collective-project-mental-health-mondays-3/
LOCATION:Virtual: United States\, United States
CATEGORIES:Support Group
ATTACH;FMTTYPE=image/png:https://www.sumairafoundation.org/wp-content/uploads/2025/10/HCP-Master-169-Facebook-Cover-3.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260126T200000
DTEND;TZID=America/New_York:20260126T210000
DTSTAMP:20260403T194458
CREATED:20260126T221135Z
LAST-MODIFIED:20260126T221135Z
UID:21137-1769457600-1769461200@www.sumairafoundation.org
SUMMARY:Human Collective Project | Mental Health Mondays
DESCRIPTION:The Mental Health Monday meetings began as a way to address the various mental and emotional concerns that individuals experience when dealing with rare neuroimmune diseases. Patients\, caregivers\, and loved ones ride the rollercoaster of feelings throughout their daily lives\, from the moment of symptom onset. Often\, getting the proper diagnosis is a journey of its own\, and dealing with life’s difficulties after that can include stressors that only others in your situation may understand. These meetings will offer a safe space for people to come together\, share their stories\, and highlight how they are coping with everyday challenges. We will discuss a range of mental health topics and have occasional special guest speakers join our meetings. So\, whether you are newly diagnosed or a seasoned zebra\, we hope to provide a space to help guide personal growth.
URL:https://www.sumairafoundation.org/event/human-collective-project-mental-health-mondays-3/
LOCATION:Virtual: United States\, United States
CATEGORIES:Support Group
ATTACH;FMTTYPE=image/png:https://www.sumairafoundation.org/wp-content/uploads/2025/10/HCP-Master-169-Facebook-Cover-3.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Rome:20260127T203000
DTEND;TZID=Europe/Rome:20260127T213000
DTSTAMP:20260403T194458
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
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Africa/Johannesburg:20260128T190000
DTEND;TZID=Africa/Johannesburg:20260128T200000
DTSTAMP:20260403T194458
CREATED:20260127T151459Z
LAST-MODIFIED:20260127T151459Z
UID:21148-1769626800-1769630400@www.sumairafoundation.org
SUMMARY:HCP South Africa
DESCRIPTION:The Human Collective Project (HCP) is TSF’s support group meeting offered to anyone who has been affected/impacted by NMOSD/MOGAD. The program came into existence during the height of the COVID-19 pandemic in 2020\, when most NMOSD/MOGAD felt particularly isolated and vulnerable to the coronavirus as immunosuppressed/immunocompromised members of society. The isolation many of us experienced unveiled a great need and opportunity for us to connect in a meaningful way to offer our support to one another.  Since 2020\, we have expanded the program to offer more sessions in multiple geographies to ensure that everyone in the Rare Neuroimmune community feels welcomed and included. As we always say\, HCP is a great way to meet others in similar circumstances in this rare community; it is a safe space to laugh\, cry\, vent\, share wins\, etc. This program is driven and led by TSF Patient and Caregiver Ambassadors worldwide. \n 
URL:https://www.sumairafoundation.org/event/hcp-south-africa-12/
LOCATION:Virtual: Global
CATEGORIES:Support Group
ATTACH;FMTTYPE=image/png:https://www.sumairafoundation.org/wp-content/uploads/2026/01/HCP-Master-169-Facebook-Cover.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260208T110000
DTEND;TZID=America/New_York:20260208T120000
DTSTAMP:20260403T194458
CREATED:20260128T114217Z
LAST-MODIFIED:20260128T114217Z
UID:21161-1770548400-1770552000@www.sumairafoundation.org
SUMMARY:TSF HCP Caregivers - Communication is Key
DESCRIPTION:The Caregivers Human Collective Project (HCP) is a groundbreaking support group hosted by The Sumaira Foundation\, created specifically for caregivers of individuals living with rare neuroimmune diseases like NMOSD and MOGAD. This first-of-its-kind session offers a safe\, inclusive space for family members\, partners\, siblings\, children\, and loved ones to connect\, share\, and be heard. Led by our dedicated Caregiver Ambassadors\, who bring their own lived experience and empathy to the conversation\, participants can expect heartfelt conversations\, mutual support\, and practical insights into the caregiving journey. Whether you’re navigating the emotional\, physical\, or logistical challenges of caregiving\, this group is designed to uplift and empower you through community\, compassion\, and connection.
URL:https://www.sumairafoundation.org/event/tsf-hcp-caregivers-communication-is-key/
LOCATION:Virtual: Global
CATEGORIES:Support Group
ATTACH;FMTTYPE=image/png:https://www.sumairafoundation.org/wp-content/uploads/2026/01/HCP-Caregiver-Visual-.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260212T200000
DTEND;TZID=America/New_York:20260212T210000
DTSTAMP:20260403T194458
CREATED:20260126T221353Z
LAST-MODIFIED:20260126T221512Z
UID:21140-1770926400-1770930000@www.sumairafoundation.org
SUMMARY:TSF's Human Collective Project Meetings
DESCRIPTION:The Human Collective Project (HCP) is TSF’s support group meeting offered to anyone who has been affected/impacted by NMOSD/MOGAD. The program came into existence during the height of the COVID-19 pandemic in 2020\, when most NMOSD/MOGAD felt particularly isolated and vulnerable to the coronavirus as immunosuppressed/immunocompromised members of society. The isolation many of us experienced unveiled a great need and opportunity for us to connect in a meaningful way to offer our support to one another. Since 2020\, we have expanded the program to offer more sessions in multiple geographies to ensure that everyone in the NMOSD/MOGAD communities feels welcomed and included. As we always say\, HCP is a great way to meet others in similar circumstances in this rare community; it is a safe space to laugh\, cry\, vent\, share wins\, etc. This program is driven and led by TSF Patient and Caregiver Ambassadors worldwide.
URL:https://www.sumairafoundation.org/event/tsfs-human-collective-project-meetings-49/
LOCATION:Virtual: Global
CATEGORIES:Support Group
ATTACH;FMTTYPE=image/jpeg:https://www.sumairafoundation.org/wp-content/uploads/2026/01/580539276_814407297887099_8833406591562928552_n.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20260213T190000
DTEND;TZID=Europe/London:20260213T200000
DTSTAMP:20260403T194458
CREATED:20260128T111711Z
LAST-MODIFIED:20260128T111711Z
UID:21158-1771009200-1771012800@www.sumairafoundation.org
SUMMARY:Human Collective Project - UK
DESCRIPTION:The Human Collective Project (HCP) is TSF’s support group meeting offered to anyone who has been affected/impacted by NMOSD/MOGAD. The program came into existence during the height of the COVID-19 pandemic in 2020\, when most NMOSD/MOGAD felt particularly isolated and vulnerable to the coronavirus as immunosuppressed/immunocompromised members of society. The isolation many of us experienced unveiled a great need and opportunity for us to connect in a meaningful way to offer our support to one another. Since 2020\, we have expanded the program to offer more sessions in multiple geographies to ensure that everyone in the Rare Neuroimmune community feels welcomed and included. As we always say\, HCP is a great way to meet others in similar circumstances in this rare community; it is a safe space to laugh\, cry\, vent\, share wins\, etc. This program is driven and led by TSF Patient and Caregiver Ambassadors worldwide.
URL:https://www.sumairafoundation.org/event/human-collective-project-uk/
LOCATION:Virtual: United Kingdom\, United Kingdom
CATEGORIES:Support Group
ATTACH;FMTTYPE=image/png:https://www.sumairafoundation.org/wp-content/uploads/2026/01/UK-HCP-Visuals-169-Facebook-Cover-640-x-200-px.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Mexico_City:20260221T100000
DTEND;TZID=America/Mexico_City:20260221T110000
DTSTAMP:20260403T194458
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
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Pacific/Honolulu:20260221T110000
DTEND;TZID=Pacific/Honolulu:20260221T170000
DTSTAMP:20260403T194458
CREATED:20260107T153754Z
LAST-MODIFIED:20260128T150925Z
UID:21017-1771671600-1771693200@www.sumairafoundation.org
SUMMARY:TSF's Honolulu Patient Day for Rare Neuroinflammatory Disorders
DESCRIPTION:Are you or your loved one impacted by MG*\, MOGAD* or NMOSD*?\nTSF is inviting patients and caregivers impacted by rare neuroinflammatory disorders from all over Hawaii to join us in Honolulu on Saturday\, February 21st in Honolulu! \nJoin us for a day of education\, community\, and fun to: \n\nMeet local patients\, partners\, care-partners and clinicians\nAsk experts questions in real time about symptom management\, treatments and therapies\, comorbidities and more\nLearn about updates on the latest research and findings from local key opinion leaders\n\nThis event is being organized in collaboration with Dr. Natalia Gonzalez Caldito (Hawaii Neuroscience) and Dr. Alexandra Galati (The Queen’s Health Systems) and in partnership with the MG Holistic Society. Registration is free and lunch will be served. We can’t wait to see you in Honolulu! \n\n\n—\n\n\nMG stands for myasthenia gravisMOGAD stands for myelin oligodendrocyte glycoprotein antibody-associated disorderNMOSD stands for neuromyelitis optica spectrum disorder
URL:https://www.sumairafoundation.org/event/tsfs-honolulu-patient-day-for-rare-neuroinflammatory-disorders/
LOCATION:hawaii convention center\, 1801 Kalākaua Ave\, Honolulu\, HI\, 96815\, United States
CATEGORIES:patient days,Patient Days,TSF Patient Day
ATTACH;FMTTYPE=image/png:https://www.sumairafoundation.org/wp-content/uploads/2026/01/Hawaii-Patient-Day-February-2026-presentation.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260126T200000
DTEND;TZID=America/New_York:20260126T210000
DTSTAMP:20260403T194458
CREATED:20260126T221135Z
LAST-MODIFIED:20260126T221135Z
UID:21137-1769457600-1769461200@www.sumairafoundation.org
SUMMARY:Human Collective Project | Mental Health Mondays
DESCRIPTION:The Mental Health Monday meetings began as a way to address the various mental and emotional concerns that individuals experience when dealing with rare neuroimmune diseases. Patients\, caregivers\, and loved ones ride the rollercoaster of feelings throughout their daily lives\, from the moment of symptom onset. Often\, getting the proper diagnosis is a journey of its own\, and dealing with life’s difficulties after that can include stressors that only others in your situation may understand. These meetings will offer a safe space for people to come together\, share their stories\, and highlight how they are coping with everyday challenges. We will discuss a range of mental health topics and have occasional special guest speakers join our meetings. So\, whether you are newly diagnosed or a seasoned zebra\, we hope to provide a space to help guide personal growth.
URL:https://www.sumairafoundation.org/event/human-collective-project-mental-health-mondays-3/
LOCATION:Virtual: United States\, United States
CATEGORIES:Support Group
ATTACH;FMTTYPE=image/png:https://www.sumairafoundation.org/wp-content/uploads/2025/10/HCP-Master-169-Facebook-Cover-3.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Bogota:20260224T190000
DTEND;TZID=America/Bogota:20260224T200000
DTSTAMP:20260403T194458
CREATED:20260202T231444Z
LAST-MODIFIED:20260202T231444Z
UID:21154-1771959600-1771963200@www.sumairafoundation.org
SUMMARY:HCP Grupo de apoyo Pacientes
DESCRIPTION:Un espacio en español para que pacientes de enfermedades neuroinmunes raras como NMOSD\, MOGAD\, etc expresen sus emociones.
URL:https://www.sumairafoundation.org/event/hcp-grupo-de-apoyo-pacientes/
LOCATION:Virtual: Colombia\, Colombia
CATEGORIES:Support Group
ATTACH;FMTTYPE=image/png:https://www.sumairafoundation.org/wp-content/uploads/2026/01/Spanish.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Africa/Johannesburg:20260128T190000
DTEND;TZID=Africa/Johannesburg:20260128T200000
DTSTAMP:20260403T194458
CREATED:20260127T151459Z
LAST-MODIFIED:20260127T151459Z
UID:21148-1769626800-1769630400@www.sumairafoundation.org
SUMMARY:HCP South Africa
DESCRIPTION:The Human Collective Project (HCP) is TSF’s support group meeting offered to anyone who has been affected/impacted by NMOSD/MOGAD. The program came into existence during the height of the COVID-19 pandemic in 2020\, when most NMOSD/MOGAD felt particularly isolated and vulnerable to the coronavirus as immunosuppressed/immunocompromised members of society. The isolation many of us experienced unveiled a great need and opportunity for us to connect in a meaningful way to offer our support to one another.  Since 2020\, we have expanded the program to offer more sessions in multiple geographies to ensure that everyone in the Rare Neuroimmune community feels welcomed and included. As we always say\, HCP is a great way to meet others in similar circumstances in this rare community; it is a safe space to laugh\, cry\, vent\, share wins\, etc. This program is driven and led by TSF Patient and Caregiver Ambassadors worldwide. \n 
URL:https://www.sumairafoundation.org/event/hcp-south-africa-12/
LOCATION:Virtual: Global
CATEGORIES:Support Group
ATTACH;FMTTYPE=image/png:https://www.sumairafoundation.org/wp-content/uploads/2026/01/HCP-Master-169-Facebook-Cover.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260226T190000
DTEND;TZID=America/New_York:20260226T200000
DTSTAMP:20260403T194458
CREATED:20260128T190035Z
LAST-MODIFIED:20260128T190035Z
UID:21174-1772132400-1772136000@www.sumairafoundation.org
SUMMARY:Meet the Author | Jayne Mattingly\, "This is Body Grief"
DESCRIPTION:In honor of Rare Disease Day 2026\, join us for a special Meet the Author fireside chat on February 26th at 7:00 PM EST. \nWe’re honored to welcome Jayne Mattingly\, author of “This is Body Grief”\, in conversation with Taylor Ann Macey\, NMOSD patient and TSF Ambassador. Their discussion will explore chronic illness\, advocacy and Jayne’s powerful book – an intimate\, lyrical reflection on living in a body shaped by illness\, grief\, resilience and care. \nA thoughtful\, honest conversation you won’t want to miss. Register here: https://us02web.zoom.us/webinar/register/WN_DJvY5tYkTK2TikJiGU2Kag \nTo order Jayne’s book\, visit https://www.amazon.com/This-Body-Grief-Making-Living/dp/0593656792
URL:https://www.sumairafoundation.org/event/meet-the-author-jayne-mattingly-this-is-body-grief/
CATEGORIES:Meet The Author
ATTACH;FMTTYPE=image/png:https://www.sumairafoundation.org/wp-content/uploads/2026/01/Meet-the-Author-Jayne-Mattingly-February-2026.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Berlin:20260307T100000
DTEND;TZID=Europe/Berlin:20260307T170000
DTSTAMP:20260403T194458
CREATED:20260121T153320Z
LAST-MODIFIED:20260128T181641Z
UID:21106-1772877600-1772902800@www.sumairafoundation.org
SUMMARY:TSF-Patiententag für seltene neuroimmunologische Erkrankungen - Berlin
DESCRIPTION:Wir kommen nach Berlin! \nSind Sie oder Ihre Angehörigen von einer der folgenden Erkrankungen betroffen: Autoimmunenzephalitis\, Myasthenia gravis\, MOGAD oder Neuromyelitis-optica-Spektrum-Erkrankung? \nWir laden Patienten\, Angehörige und medizinisches Fachpersonal aus der DACH-Region herzlich zu einer Sonderveranstaltung für Patienten und Angehörige am Samstag\, den 7. März\, in der Charité Berlin ein (Charité Campus Virchow-Klinikum Augustenburger Pl. 113353 Berlin) \nNehmen Sie teil an einem Tag voller Bildung\, Gemeinschaft und Austausch\, um: \n\nlokale Patienten\, Partner\, Pflegekräfte und medizinisches Fachpersonal zu treffen\nExperten live Fragen zu Symptommanagement\, Behandlungsmöglichkeiten\, Therapien\, Begleiterkrankungenund vielem mehr zu stellen\ndie neuesten Forschungsergebnisse und Erkenntnisse von führenden Meinungsbildnern aus der Region zu erfahren\n\nDiese Veranstaltung wird in Zusammenarbeit mit dem NEMOS-Netzwerk organisiert. Die Teilnahme ist kostenlos\, und es wird ein Mittagessen angeboten. https://tinyurl.com/TSFBerlin
URL:https://www.sumairafoundation.org/event/tsf-patiententag-fur-seltene-neuroimmunologische-erkrankungen-berlin/
LOCATION:Charité Campus Virchow-Klinikum\, Augustenburger Pl. 1\, Berlin\, 13353\, Germany
CATEGORIES:patient days
ATTACH;FMTTYPE=image/png:https://www.sumairafoundation.org/wp-content/uploads/2026/01/Berlin-Patient-Day-March-2026-1.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260212T200000
DTEND;TZID=America/New_York:20260212T210000
DTSTAMP:20260403T194458
CREATED:20260126T221353Z
LAST-MODIFIED:20260126T221512Z
UID:21140-1770926400-1770930000@www.sumairafoundation.org
SUMMARY:TSF's Human Collective Project Meetings
DESCRIPTION:The Human Collective Project (HCP) is TSF’s support group meeting offered to anyone who has been affected/impacted by NMOSD/MOGAD. The program came into existence during the height of the COVID-19 pandemic in 2020\, when most NMOSD/MOGAD felt particularly isolated and vulnerable to the coronavirus as immunosuppressed/immunocompromised members of society. The isolation many of us experienced unveiled a great need and opportunity for us to connect in a meaningful way to offer our support to one another. Since 2020\, we have expanded the program to offer more sessions in multiple geographies to ensure that everyone in the NMOSD/MOGAD communities feels welcomed and included. As we always say\, HCP is a great way to meet others in similar circumstances in this rare community; it is a safe space to laugh\, cry\, vent\, share wins\, etc. This program is driven and led by TSF Patient and Caregiver Ambassadors worldwide.
URL:https://www.sumairafoundation.org/event/tsfs-human-collective-project-meetings-49/
LOCATION:Virtual: Global
CATEGORIES:Support Group
ATTACH;FMTTYPE=image/jpeg:https://www.sumairafoundation.org/wp-content/uploads/2026/01/580539276_814407297887099_8833406591562928552_n.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260315T110000
DTEND;TZID=America/New_York:20260315T120000
DTSTAMP:20260403T194458
CREATED:20260201T163548Z
LAST-MODIFIED:20260201T165057Z
UID:21205-1773572400-1773576000@www.sumairafoundation.org
SUMMARY:TSF HCP Caregivers - Caregiver Burnout
DESCRIPTION:The Caregivers Human Collective Project (HCP) is a groundbreaking support group hosted by The Sumaira Foundation\, created specifically for caregivers of individuals living with rare neuroimmune diseases like NMOSD and MOGAD. This first-of-its-kind session offers a safe\, inclusive space for family members\, partners\, siblings\, children\, and loved ones to connect\, share\, and be heard. Led by our dedicated Caregiver Ambassadors\, who bring their own lived experience and empathy to the conversation\, participants can expect heartfelt conversations\, mutual support\, and practical insights into the caregiving journey. Whether you’re navigating the emotional\, physical\, or logistical challenges of caregiving\, this group is designed to uplift and empower you through community\, compassion\, and connection.
URL:https://www.sumairafoundation.org/event/tsf-hcp-caregivers-caregiver-burnout/
LOCATION:Virtual: Global
CATEGORIES:Support Group
ATTACH;FMTTYPE=image/png:https://www.sumairafoundation.org/wp-content/uploads/2026/01/HCP-Caregiver-Visual-.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260324T130000
DTEND;TZID=America/New_York:20260324T140000
DTSTAMP:20260403T194458
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
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