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DTSTART;TZID=America/New_York:20251211T193000
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DTSTAMP:20260510T131346
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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:20251214T110000
DTEND;TZID=America/New_York:20251214T120000
DTSTAMP:20260510T131346
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:20260510T131346
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=America/Bogota:20251216T190000
DTEND;TZID=America/Bogota:20251216T200000
DTSTAMP:20260510T131346
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
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BEGIN:VEVENT
DTSTART;TZID=Europe/Istanbul:20251223T160000
DTEND;TZID=Europe/Istanbul:20251223T170000
DTSTAMP:20260510T131346
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:20260510T131346
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
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