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BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260518T153000
DTEND;TZID=America/New_York:20260518T163000
DTSTAMP:20260424T195529Z
CREATED:20260424T195529Z
LAST-MODIFIED:20260424T195529Z
UID:10000442-1779118200-1779121800@www.sumairafoundation.org
SUMMARY:Managing Chronic Pain
DESCRIPTION:Living with chronic pain can feel overwhelming\, but you don’t have to face it alone. You’re invited to a webinar focused on navigating chronic pain with clarity\, support\, and hope. \nOn Monday\, May 18th at 3:30 PM EST\, we’ll be joined by Dr. Anastasia Vishnevetsky\, neuroimmunologist at Mass General Brigham/Harvard Medical School\, who will share practical strategies and insights to help individuals better understand and manage chronic pain in their daily lives. This session is designed with patients and caregivers in mind—offering approachable\, real-world guidance in a supportive and inclusive space. \nTogether\, we’ll explore ways to improve quality of life\, build resilience\, and feel more empowered in your care journey. Attendees who join live will have the opportunity to ask questions and engage directly during the session. \nWe hope you’ll join us for this meaningful conversation and take a step toward feeling more supported and informed. \nThis program is made possible with support from Amgen.
URL:https://www.sumairafoundation.org/event/managing-chronic-pain/
LOCATION:Virtual: Global
CATEGORIES:From The Experts,TSF Webinar
ATTACH;FMTTYPE=image/jpeg:https://www.sumairafoundation.org/wp-content/uploads/2026/04/Anastasia-Vishnevetsky.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260510T120000
DTEND;TZID=America/New_York:20260510T130000
DTSTAMP:20260430T134338Z
CREATED:20260430T134338Z
LAST-MODIFIED:20260430T134338Z
UID:10000446-1778414400-1778418000@www.sumairafoundation.org
SUMMARY:TSF HCP Caregiver's - Dealing with Depression
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-dealing-with-depression/
LOCATION:Virtual: Global
CATEGORIES:Support Group
ATTACH;FMTTYPE=image/png:https://www.sumairafoundation.org/wp-content/uploads/2026/04/HCP-Caregiver-Visual-.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260412T110000
DTEND;TZID=America/New_York:20260412T120000
DTSTAMP:20260201T164501Z
CREATED:20260201T164201Z
LAST-MODIFIED:20260201T164501Z
UID:10000434-1775991600-1775995200@www.sumairafoundation.org
SUMMARY:TSF HCP Caregivers - Coping with Caregiving Emotions
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-coping-with-caregiving-emotions/
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:20260315T110000
DTEND;TZID=America/New_York:20260315T120000
DTSTAMP:20260201T165057Z
CREATED:20260201T163548Z
LAST-MODIFIED:20260201T165057Z
UID:10000433-1773572400-1773576000@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:20260208T110000
DTEND;TZID=America/New_York:20260208T120000
DTSTAMP:20260128T114217Z
CREATED:20260128T114217Z
LAST-MODIFIED:20260128T114217Z
UID:10000430-1770548400-1770552000@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:20260115T200000
DTEND;TZID=America/New_York:20260115T210000
DTSTAMP:20260112T151849Z
CREATED:20260112T151551Z
LAST-MODIFIED:20260112T151849Z
UID:10000334-1768507200-1768510800@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/New_York:20260111T110000
DTEND;TZID=America/New_York:20260111T120000
DTSTAMP:20260107T192746Z
CREATED:20260103T205601Z
LAST-MODIFIED:20260107T192746Z
UID:10000331-1768129200-1768132800@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:20251214T110000
DTEND;TZID=America/New_York:20251214T120000
DTSTAMP:20251204T203122Z
CREATED:20251204T203122Z
LAST-MODIFIED:20251204T203122Z
UID:10000327-1765710000-1765713600@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:20251116T110000
DTEND;TZID=America/New_York:20251116T120000
DTSTAMP:20251008T155726Z
CREATED:20251008T155726Z
LAST-MODIFIED:20251008T155726Z
UID:10000316-1763290800-1763294400@www.sumairafoundation.org
SUMMARY:Human Collective Project | 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/human-collective-project-caregivers/
LOCATION:Virtual: Global
CATEGORIES:Support Group
ATTACH;FMTTYPE=image/jpeg:https://www.sumairafoundation.org/wp-content/uploads/2025/10/Caregiver-Visual-FB.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Athens:20251110T180000
DTEND;TZID=Europe/Athens:20251110T190000
DTSTAMP:20251013T232703Z
CREATED:20251013T232500Z
LAST-MODIFIED:20251013T232703Z
UID:10000322-1762797600-1762801200@www.sumairafoundation.org
SUMMARY:Κατανόηση της MOGAD και της σημασίας της συμμετοχής των ασθενών σε κλινικές δοκιμές
DESCRIPTION:Εσείς ή κάποιος που αγαπάτε επηρεάζεστε από το MOGAD; \nΣας προσκαλούμε να συμμετάσχετε στο επερχόμενο πρόγραμμά μας αφιερωμένο στην MOGAD τη Δευτέρα 10 Νοεμβρίου στις 6 μ.μ. EET. \nΘα συμμετάσχουν ο Καθηγητής Νικόλας Γρηγοριάδης και η Δρ. Έλμα Ευαγγελοπούλου\, οι οποίοι θα συζητήσουν τα συμπτώματα\, τις θεραπείες και τις κλινικές δοκιμές της MOGAD. \nΟι συμμετέχοντες που θα συμμετάσχουν ζωντανά θα έχουν την ευκαιρία να θέσουν ερωτήσεις στους ειδικούς. Αυτό το διαδικτυακό σεμινάριο θα ηχογραφηθεί και θα είναι διαθέσιμο στο κανάλι YouTube του TSF. \nΑυτό το πρόγραμμα καθίσταται δυνατό με την υποστήριξη του UCB.
URL:https://www.sumairafoundation.org/event/%ce%ba%ce%b1%cf%84%ce%b1%ce%bd%cf%8c%ce%b7%cf%83%ce%b7-%cf%84%ce%b7%cf%82-mogad-%ce%ba%ce%b1%ce%b9-%cf%84%ce%b7%cf%82-%cf%83%ce%b7%ce%bc%ce%b1%cf%83%ce%af%ce%b1%cf%82-%cf%84%ce%b7%cf%82-%cf%83%cf%85/
LOCATION:Virtual: Global
CATEGORIES:Understanding MOGAD
ATTACH;FMTTYPE=image/jpeg:https://www.sumairafoundation.org/wp-content/uploads/2025/10/GREEK.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Asia/Kuwait:20250909T190000
DTEND;TZID=Asia/Kuwait:20250909T200000
DTSTAMP:20250813T170324Z
CREATED:20250813T170324Z
LAST-MODIFIED:20250813T170324Z
UID:10000306-1757444400-1757448000@www.sumairafoundation.org
SUMMARY:إدارة الأعراض والأمراض المصاحبة مع اضطراب الطيف العصبي البصري
DESCRIPTION:سيناقش هذا الويبينار أحدث الطرق والرؤى حول إدارة الأعراض الأساسية والاعتلالات المصاحبة لاضطراب الطيف العصبي البصري .(NMOSD) \nسيركز المختصون المشاركون على التحديات التي يواجهها المرضى في التعامل مع المرض، وأفضل الممارسات لتحسين جودة الحياة، واستراتيجيات علاجية للتعامل مع الأمراض المصاحبة. سيحظى الحضور أيضًا بفرصة لطرح الأسئلة والنقاش مع الخبراء في هذا المجال
URL:https://www.sumairafoundation.org/event/%d8%a5%d8%af%d8%a7%d8%b1%d8%a9-%d8%a7%d9%84%d8%a3%d8%b9%d8%b1%d8%a7%d8%b6-%d9%88%d8%a7%d9%84%d8%a3%d9%85%d8%b1%d8%a7%d8%b6-%d8%a7%d9%84%d9%85%d8%b5%d8%a7%d8%ad%d8%a8%d8%a9-%d9%85%d8%b9-%d8%a7%d8%b6/
LOCATION:Virtual: Global
CATEGORIES:From The Experts
ATTACH;FMTTYPE=image/png:https://www.sumairafoundation.org/wp-content/uploads/2025/08/Seraj-Makkawi-Salman-Aljarallah.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20250904T200000
DTEND;TZID=Europe/London:20250904T210000
DTSTAMP:20250811T150509Z
CREATED:20250717T145545Z
LAST-MODIFIED:20250811T150509Z
UID:10000294-1757016000-1757019600@www.sumairafoundation.org
SUMMARY:Understanding MOGAD & The Importance of Patient Participation in Clinical Trials
DESCRIPTION:Have you or someone close to you been affected by MOGAD? Join us on Thursday\, September 4th to learn about MOGAD and the importance of patient participation in clinical trials. This program will feature Dr. Saif Huda (The Walton Centre – UK)\, Dr. Silvia Messina (Nuffield Department of Clinical Neurosciences – UK) and Dr. Katharina Fink (Karolinska University Hospital and Karolinska Institutet – Sweden) who will answer questions from our audience in real time. This program is promoted by the Sumaira Foundation in collaboration with mymyelitis and is made possible with support from UCB.
URL:https://www.sumairafoundation.org/event/understanding-mogad-the-importance-of-patient-participation-in-clinical-trials/
LOCATION:Virtual: Global
CATEGORIES:Understanding MOGAD
ATTACH;FMTTYPE=image/png:https://www.sumairafoundation.org/wp-content/uploads/2025/07/ENGLISHUKSWEDEN.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Bogota:20250203T180000
DTEND;TZID=America/Bogota:20250203T190000
DTSTAMP:20250116T190007Z
CREATED:20250116T190007Z
LAST-MODIFIED:20250116T190007Z
UID:10000256-1738605600-1738609200@www.sumairafoundation.org
SUMMARY:Tratamientos para MOGAD
DESCRIPTION:Únase a nosotros el 3 de febrero para una presentación en vivo y una discusión sobre las opciones de tratamiento para pacientes de MOGAD en América Latina. \n  \nPara registrarse\, visite: https://us02web.zoom.us/webinar/register/WN_hLhettqCQQGgi1nt5Lf68A \n  \nLos asistentes tendrán la oportunidad de hacer preguntas a los expertos. Este seminario web se grabará y estará disponible para reproducirse en el canal de YouTube de TSF. \n  \nEste programa es posible gracias al apoyo de Amgen.
URL:https://www.sumairafoundation.org/event/tratamientos-para-mogad/
LOCATION:Virtual: Global
CATEGORIES:From The Experts
ATTACH;FMTTYPE=image/png:https://www.sumairafoundation.org/wp-content/uploads/2025/01/Contentti-and-Navas.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250131T110000
DTEND;TZID=America/New_York:20250131T120000
DTSTAMP:20250127T161446Z
CREATED:20241211T165158Z
LAST-MODIFIED:20250127T161446Z
UID:10000253-1738321200-1738324800@www.sumairafoundation.org
SUMMARY:Managing Incontinence with Neuroimmune Disorders
DESCRIPTION:Join us on December 20th for TSF’s final webinar of 2024: Managing Incontinence with Neuroimmune Disorders featuring Dr. Raveen Syan\, Urologist and Assistant Professor of Clinical Urology at The University of Miami. \nDr. Syan will discuss urinary\, bowel and sexual dysfunction in the setting of neuroimmune conditions. Attendees joining the live program will have the opportunity to ask Dr. Raveen questions in real time. This webinar will be recorded and available for replay on TSF’s YouTube channel. \nThis program is made possible with support from Amgen.
URL:https://www.sumairafoundation.org/event/managing-incontinence-with-neuroimmune-disorders/
LOCATION:Virtual: Global
CATEGORIES:From The Experts
ATTACH;FMTTYPE=image/png:https://www.sumairafoundation.org/wp-content/uploads/2024/12/Raveen-Syan-1.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Paris:20250129T200000
DTEND;TZID=Europe/Paris:20250129T210000
DTSTAMP:20250127T162423Z
CREATED:20250127T162011Z
LAST-MODIFIED:20250127T162423Z
UID:10000259-1738180800-1738184400@www.sumairafoundation.org
SUMMARY:LES TROUBLES DU SOMMEIL : THÉORIE ET PRATIQUE POUR MIEUX DORMIR
DESCRIPTION:Les troubles du sommeil sont courants dans les maladies neurologiques. La NMO et la MOGAD ne font pas exception. Que ce soit les troubles de l’endormissement\, les réveils\, le sommeil peu réparateur\, les troubles sont variés et difficiles de s’en débarrasser. \nEn compagnie de Véronique Carrette\, sophrologue et hypnothérapeute\, Bérengère et Fatiha\, ambassadrices TSF\, nous les évoquerons mais surtout nous échangerons des trucs et astuces et des moyens d’améliorer la qualité de son sommeil. Retrouvez-nous en ligne ce mercredi 29 janvier à 20 heures. Vous pourrez poser toutes vos questions.
URL:https://www.sumairafoundation.org/event/les-troubles-du-sommeil-theorie-et-pratique-pour-mieux-dormir/
LOCATION:Virtual: Global
CATEGORIES:From The Experts
ATTACH;FMTTYPE=image/png:https://www.sumairafoundation.org/wp-content/uploads/2025/01/Veronique-Carrette.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20241205T130000
DTEND;TZID=America/New_York:20241205T140000
DTSTAMP:20241118T124748Z
CREATED:20241113T185421Z
LAST-MODIFIED:20241118T124748Z
UID:10000251-1733403600-1733407200@www.sumairafoundation.org
SUMMARY:Comprender MOGAD y la importancia de la participación del paciente
DESCRIPTION:TSF lo invita a unirse a nuestro próximo seminario web en español sobre MOGAD y la importancia de la participación de los pacientes en los ensayos clínicos. Nos sentimos honrados de contar con el Dr. José Flores de México y la Dra. Lucienne Costa Frossard França de España. ¡Esperamos que se una a nosotros en esta importante discusión!
URL:https://www.sumairafoundation.org/event/comprender-mogad-y-la-importancia-de-la-participacion-del-paciente/
LOCATION:Virtual: Global
CATEGORIES:Understanding MOGAD
ATTACH;FMTTYPE=image/jpeg:https://www.sumairafoundation.org/wp-content/uploads/2024/11/SPANISH-2.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Paris:20241204T200000
DTEND;TZID=Europe/Paris:20241204T210000
DTSTAMP:20241120T195716Z
CREATED:20241120T195511Z
LAST-MODIFIED:20241120T195716Z
UID:10000252-1733342400-1733346000@www.sumairafoundation.org
SUMMARY:Vécu\, besoins et attentes des patient(e)s français
DESCRIPTION:Les résultats sont là ! Vous avez peut-être participé à l’enquête réalisée par Alexion en partenariat avec The Sumaira Foundation France intitulée “Vécu\, besoins et attentes des patient(e)s atteint(e)s de NMOSD”. \nEn compagnie du Docteur Livia Lanotte\, neurologue et présidente du réseau Alsacep\, et Bérengère\, ambassadrice TSF\, nous reviendrons sur les résultats et les enseignements de cette enquête. TSF France a travaillé sur le questionnaire afin que la parole recueillie puisse servir le plus grand nombre. Nous pourrons nous appuyer sur les résultats de cette enquête pour porter un plaidoyer fort auprès des pouvoirs publics afin d’améliorer le quotidien des personnes touchées par une NMOSD ou une MOGAD. \nCe programme est rendu possible grâce au soutien de Alexion.
URL:https://www.sumairafoundation.org/event/vecu-besoins-et-attentes-des-patientes-francais/
LOCATION:Virtual: Global
CATEGORIES:From The Experts
ATTACH;FMTTYPE=image/png:https://www.sumairafoundation.org/wp-content/uploads/2024/11/Livia-Lanotte.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Asia/Kolkata:20241123T090000
DTEND;TZID=Asia/Kolkata:20241123T100000
DTSTAMP:20241120T201500Z
CREATED:20241112T205613Z
LAST-MODIFIED:20241120T201500Z
UID:10000250-1732352400-1732356000@www.sumairafoundation.org
SUMMARY:डिमायेलिनेटिंग बीमारियों पर जागरूकता और मार्गदर्शन
DESCRIPTION:कृपया 23 नवम्बर को सुबह 9 बजे IST पर हमारे विशेष वेबिनार में सम्मिलित हों\, जिसमें डॉ. पार्थवी रावत द्वारा डिमायेलिनेटिंग बीमारियों से प्रभावित रोगियों और उनके परिवारों को शिक्षित और सहायता प्रदान करने हेतु बहुमूल्य जानकारी और विशेषज्ञ मार्गदर्शन दिया जाएगा। लाइव वेबिनार में शामिल होने वाले प्रतिभागियों को डॉ. रावत से सीधे प्रश्न पूछने का अवसर मिलेगा। यह सत्र रिकॉर्ड किया जाएगा और TSF के यूट्यूब चैनल पर पुनः देखने के लिए उपलब्ध रहेगा। यह कार्यक्रम एमजेन के समर्थन से संभव हुआ है।
URL:https://www.sumairafoundation.org/event/%e0%a4%a1%e0%a4%bf%e0%a4%ae%e0%a4%be%e0%a4%af%e0%a5%87%e0%a4%b2%e0%a4%bf%e0%a4%a8%e0%a5%87%e0%a4%9f%e0%a4%bf%e0%a4%82%e0%a4%97-%e0%a4%ac%e0%a5%80%e0%a4%ae%e0%a4%be%e0%a4%b0%e0%a4%bf%e0%a4%af%e0%a5%8b/
LOCATION:Virtual: Global
CATEGORIES:From The Experts
ATTACH;FMTTYPE=image/png:https://www.sumairafoundation.org/wp-content/uploads/2024/11/Parthvi-Ravat.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Berlin:20241115T160000
DTEND;TZID=Europe/Berlin:20241115T170000
DTSTAMP:20241112T144234Z
CREATED:20241112T144234Z
LAST-MODIFIED:20241112T144234Z
UID:10000249-1731686400-1731690000@www.sumairafoundation.org
SUMMARY:Imaging Features of MOGAD & NMOSD
DESCRIPTION:TSF is pleased to provide the Iranian neurology community around the globe with another lecture and case discussion: Imaging Features of MOGAD & NMOSD led by Dr. Eoin Flanagan\, Professor of Neurology\, Chair\, Division of Multiple Sclerosis and Autoimmune Neurology\, Program Director\, Autoimmune Neurology Fellowship\, Consultant\, Departments of Neurology & Laboratory Medicine & Pathology at Mayo Clinic College of Medicine. \nWe invite clinicians & researchers from all over the world to join this important discussion. \nThis series is being organized by Prof. Mohammad Ali Sahraian ( Tehran University of Medical Sciences) and Dr. Sara Samadzadeh (Charité Universitätsmedizin Berlin).
URL:https://www.sumairafoundation.org/event/imaging-features-of-mogad-nmosd/
LOCATION:Virtual: Global
CATEGORIES:Case Discussion + Lecture
ATTACH;FMTTYPE=image/png:https://www.sumairafoundation.org/wp-content/uploads/2024/11/EFlanagan.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Paris:20241025T163000
DTEND;TZID=Europe/Paris:20241025T173000
DTSTAMP:20241009T202814Z
CREATED:20241009T202215Z
LAST-MODIFIED:20241009T202814Z
UID:10000244-1729873800-1729877400@www.sumairafoundation.org
SUMMARY:Recent Findings on Retinal Changes in AQP4-NMOSD\, MOGAD & DS cases
DESCRIPTION:TSF is pleased to provide the Iranian neurology community around the globe with another lecture and case discussion: Recent Findings on Retinal Changes in AQP4-NMOSD\, MOGAD & DS cases led by Dr. Frederike Cosima Oertel\, neuroimmunologist and NMOSD/MOGAD expert from Charité-Universitätsmedizin Berlin\, Germany. \nWe invite clinicians & researchers from all over the world to join this important discussion. \nThis series is being organized by Prof. Mohammad Ali Sahraian (Tehran University of Medical Sciences) and Dr. Sara Samadzadeh (Charité Universitätsmedizin Berlin).
URL:https://www.sumairafoundation.org/event/iranian-insights-iranian-insights-recent-findings-on-retinal-changes-in-aqp4-nmosd-mogad-ds-cases/
LOCATION:Virtual: Global
CATEGORIES:Case Discussion + Lecture
ATTACH;FMTTYPE=image/jpeg:https://www.sumairafoundation.org/wp-content/uploads/2024/10/462608430_524240960237069_5635395659284592719_n.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Paris:20240927T090000
DTEND;TZID=Europe/Paris:20240927T100000
DTSTAMP:20240904T171229Z
CREATED:20240904T171229Z
LAST-MODIFIED:20240904T171229Z
UID:10000220-1727427600-1727431200@www.sumairafoundation.org
SUMMARY:Iranian Insights: NMOSD Treatments
DESCRIPTION:TSF is pleased to provide the Iranian neurology community around the globe with another lecture and case discussion: NMOSD Treatments led by Prof. Romain Marignier\, neuroimmunologist and global NMOSD/MOGAD expert. \nWe invite clinicians & researchers from all over the world to join this important discussion. \nThis series is being organized by Prof. Mohammad Ali Sahraian (Tehran University of Medical Sciences)\, Dr. Sara Samadzadeh (Charité Universitätsmedizin Berlin) and Dr. Masoud Majed (Keck School of Medicine of USC).
URL:https://www.sumairafoundation.org/event/iranian-insights-nmosd-treatments/
LOCATION:Virtual: Global
CATEGORIES:Case Discussion + Lecture
ATTACH;FMTTYPE=image/jpeg:https://www.sumairafoundation.org/wp-content/uploads/2024/09/RMarignier.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240829T190000
DTEND;TZID=America/New_York:20240829T200000
DTSTAMP:20240807T191148Z
CREATED:20240807T191148Z
LAST-MODIFIED:20240807T191148Z
UID:10000214-1724958000-1724961600@www.sumairafoundation.org
SUMMARY:TSF's Exclusive TEEN & Young Adult HCP Meeting
DESCRIPTION:Are you a teen or young adult affected by rare neuroimmune disorders such as NMOSD or MOGAD? All are welcome between the ages of 13-25. \nThe 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. \nSince 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-exclusive-teen-young-adult-hcp-meeting/
LOCATION:Virtual: Global
ATTACH;FMTTYPE=image/png:https://www.sumairafoundation.org/wp-content/uploads/2024/08/TEEN.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Asia/Tehran:20240726T183000
DTEND;TZID=Asia/Tehran:20240726T193000
DTSTAMP:20240710T004636Z
CREATED:20240710T004504Z
LAST-MODIFIED:20240710T004636Z
UID:10000207-1722018600-1722022200@www.sumairafoundation.org
SUMMARY:Iranian Insights: Treatment Strategy for MOGAD: Acute & Maintenance Therapy
DESCRIPTION:TSF is pleased to provide the Iranian neurology community around the globe with another lecture and case discussion: Treatment Strategy for MOGAD: Acute & Maintenance Therapy led by Dr. Sara Mariotto\, neuroimmunologist and global NMOSD/MOGAD expert. \nWe invite clinicians & researchers from all over the world to join this important discussion. \nThis series is being organized by Dr. Sara Samadzadeh (Charité Universitätsmedizin Berlin)\, Dr. Masoud Majed (Keck School of Medicine of USC)\, and Dr. Mohammad Ali Sahraian ( Tehran University of Medical Sciences).
URL:https://www.sumairafoundation.org/event/iranian-insights-treatment-strategy-for-mogad-acute-maintenance-therapy/
LOCATION:Virtual: Global
CATEGORIES:Case Discussion + Lecture
ATTACH;FMTTYPE=image/jpeg:https://www.sumairafoundation.org/wp-content/uploads/2024/07/Illuminate-Insight-NMOSD-MOGAD-Iran.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240621T120000
DTEND;TZID=America/New_York:20240621T130000
DTSTAMP:20240618T163936Z
CREATED:20240603T171348Z
LAST-MODIFIED:20240618T163936Z
UID:10000200-1718971200-1718974800@www.sumairafoundation.org
SUMMARY:Approved NMOSD Therapies
DESCRIPTION:In 2014\, there were 0 FDA-approved therapies for patients living with neuromyelitis optica spectrum disorder (NMOSD). In 2024\, there are 4 efficacious\, FDA-approved therapies available for patients living with NMOSD. \nYou’re invited to “Approved NMOSD Therapies” a live webinar during which Dr. Sean Pittock* of the Mayo Clinic will provide overviews (pharmacology\, drug delivery method\, dosing\, frequency\, side effects\, reduction in relapse rates\, antibody criteria\, etc.) of each approved therapy. \nWe invite patients\, caregivers\, clinicians\, researchers\, advocates\, industry professionals or anyone interested in NMOSD to join this educational program. Live attendees will have the opportunity to ask Dr. Pittock questions in real time. \nThis webinar will be recorded and made available for replay on TSF’s YouTube channel and global website. \n*Sean J. Pittock\, M.D.\nConsultant\, Department of Neurology\nProfessor of Neurology\nMarilyn A Park and Moon S. Park\, M.D. Director of the Mayo Clinic’s Center for Multiple Sclerosis and Autoimmune Neurology\,\nApplebaum Family Professor of Neurosciences
URL:https://www.sumairafoundation.org/event/approved-nmosd-therapies/
LOCATION:Virtual: Global
CATEGORIES:TSF Webinar
ATTACH;FMTTYPE=image/png:https://www.sumairafoundation.org/wp-content/uploads/2024/06/Sean-Pittock-3.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240330T100000
DTEND;TZID=America/New_York:20240330T110000
DTSTAMP:20240325T191109Z
CREATED:20240325T191109Z
LAST-MODIFIED:20240325T191109Z
UID:10000178-1711792800-1711796400@www.sumairafoundation.org
SUMMARY:The Human Collective Project Global
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. \nSince 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/the-human-collective-project-global/
LOCATION:Virtual: Global
CATEGORIES:Support Group
ATTACH;FMTTYPE=image/png:https://www.sumairafoundation.org/wp-content/uploads/2024/03/092b008f-8852-4a95-aab3-9b3578c950f2.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240301T100000
DTEND;TZID=America/New_York:20240301T110000
DTSTAMP:20240229T141927Z
CREATED:20240220T202321Z
LAST-MODIFIED:20240229T141927Z
UID:10000165-1709287200-1709290800@www.sumairafoundation.org
SUMMARY:Myths & Facts - Family Planning Considerations for NMOSD & other rare neurological conditions
DESCRIPTION:To celebrate NMO Awareness Month 2024\, The Sumaira Foundation invites you to join an insightful discussion about an important topic: Family Planning. \nJoin us on March 1st for a live webinar featuring Dr. Ahmed Shatila who will share myths & facts about family planning in people living with NMOSD & other rare neuro-immunological conditions. Dr. Shatila will discuss contraception and other factors that are important for people to plan with their neurologists and obstetricians. He will talk about the implications of a relapse before or during pregnancy and how to approach certain scenarios. Dr Shatila will outline the benefits and risks of several medications and options for treatment scheduling\, symptom management\, and MRI preparation. Finally\, we’ll conclude with discussing the considerations for labor and breastfeeding. \nThis meeting will be conducted in English with Arabic subtitles. Attendees will have the opportunity to ask Dr. Shatila questions in real time. This webinar will be recorded and made available on TSF’s YouTube channel and global website. \nThis program is made possible with support from AstraZeneca.
URL:https://www.sumairafoundation.org/event/myths-facts-family-planning-considerations-for-nmosd-other-rare-neurological-conditions/
LOCATION:Virtual: Global
CATEGORIES:From The Experts
ATTACH;FMTTYPE=image/jpeg:https://www.sumairafoundation.org/wp-content/uploads/2024/02/Ahmed-Shatila.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20230602T150000
DTEND;TZID=America/New_York:20230602T160000
DTSTAMP:20230515T174248Z
CREATED:20230515T174248Z
LAST-MODIFIED:20230515T174248Z
UID:10000092-1685718000-1685721600@www.sumairafoundation.org
SUMMARY:Double sero-negative NMOSD
DESCRIPTION:Do you or your loved one continue to test negative for the AQP4 and MOG antibodies? You are not alone! \n  \nYou’re invited to attend “Double sero-negative NMOSD” on Friday\, June 2nd at 12 PM PST / 3PM EST / 9 PM CET featuring Dr. Eoin Flanagan\, Professor of Neurology\, Chair of the Division of Multiple Sclerosis and Autoimmune Neurology\, Director of the Autoimmune Neurology Fellowship and Consultant in the departments of Neurology and Laboratory Medicine and Pathology at the Mayo Clinic (Rochester\, MN). \n  \nDr. Flanagan will be in conversation with Sumaira\, presenting live from the CMSC 2023 Annual Meeting in Aurora\, CO. Live attendees will have the opportunity to ask Dr. Flanagan questions in real time. This webinar will be recorded and available for replay on TSF’s Multimedia Library and YouTube channel. \n  \nThis educational event is made possible through a patient education grant from Horizon Therapeutics.
URL:https://www.sumairafoundation.org/event/double-sero-negative-nmosd/
LOCATION:Virtual: Global
CATEGORIES:From The Experts
ATTACH;FMTTYPE=image/png:https://www.sumairafoundation.org/wp-content/uploads/2023/05/Eoin-Flanagan.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20230429T120000
DTEND;TZID=America/New_York:20230429T130000
DTSTAMP:20230424T185651Z
CREATED:20230131T163136Z
LAST-MODIFIED:20230424T185651Z
UID:10000062-1682769600-1682773200@www.sumairafoundation.org
SUMMARY:Cabaret for A Cause
DESCRIPTION:In celebration of NMOSD & MOGAD Awareness Months\, TSF is pleased to present “Cabaret for a Cause\,” a dance class taught by professional choreographers / show girls from a world-renowned cabaret in Paris\, France. \nEmma Castel and Deborah Lettieri will be teaching the class for both standing and seated attendees! \n100% of proceeds will be donated towards research for neuromyelitis optica spectrum disorder (NMOSD) and myelin oligodendrocyte glycoprotein antibody disorder (MOGAD).
URL:https://www.sumairafoundation.org/event/cabaret-for-a-cause/
LOCATION:Virtual: Global
CATEGORIES:TSF Events/Fundraisers
ATTACH;FMTTYPE=image/png:https://www.sumairafoundation.org/wp-content/uploads/2023/01/2023-Cabaret-for-a-Cause-2.0-Eventbrite-2.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20230427T160000
DTEND;TZID=America/New_York:20230427T170000
DTSTAMP:20230411T204403Z
CREATED:20230411T200034Z
LAST-MODIFIED:20230411T204403Z
UID:10000086-1682611200-1682614800@www.sumairafoundation.org
SUMMARY:NMOSD y MOGAD\, Perlas en el Diagnóstico y Opciones para el Tratamiento
DESCRIPTION:Está invitado a asistir a la videoconferencia “NMOSD y MOGAD\, Perlas en el Diagnóstico y Opciones para el Tratamiento” el viernes 27 de abril a las 2:00 pm México / 4:00 pm Venezuela / 5:00 pm Argentina. Médicos especialistas de 3 diferentes países de Latinoamérica unen esfuerzos para abordar temas de interés común para todos. \n“Perlas en el Diagnóstico Diferencial (EM\, NMOSD\, MOGAD)”\, Dr. Edgar Carnero Contentti. \n“Tratamiento con Eculizumab\, Satralizumab\, Inebilizumab en NMO”\, Dra. Sarah Vargas. \n“Impactos Socioeconómicos de la Enfermedad y Acceso Entre Fronteras”\, Dr. José Flores Rivera. \nLos asistentes conectados a la videoconferencia tendrán la oportunidad de hacer preguntas a los tres doctores en tiempo real. Esta conferencia web se grabará y estará disponible para su reproducción\, tanto en la biblioteca multimedia\, como en el canal de YouTube de The Sumaira Foundation. \nEste evento educativo es posible gracias a una subvención para la educación del paciente de Horizon Therapeutics.
URL:https://www.sumairafoundation.org/event/nmosd-y-mogad-perlas-en-el-diagnostico-y-opciones-para-el-tratamiento/
LOCATION:Virtual: Global
CATEGORIES:From The Experts,TSF Programming
ATTACH;FMTTYPE=image/png:https://www.sumairafoundation.org/wp-content/uploads/2023/04/JFloresEContenttiSVargas.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20230412T190000
DTEND;TZID=America/New_York:20230412T203000
DTSTAMP:20230316T151900Z
CREATED:20230312T140038Z
LAST-MODIFIED:20230316T151900Z
UID:10000076-1681326000-1681331400@www.sumairafoundation.org
SUMMARY:Meet the Author | Kyle Bryant\, "Shifting Into High Gear"
DESCRIPTION:TSF is pleased to invite you to an exclusive “Meet the Author” fireside chat between Sumaira and Kyle Bryant\, an author\, athlete\, speaker\, and spokesperson for Friedreich’s Ataxia Research Alliance (FARA). \n“Shifting Into High Gear” charts the course of Kyle’s transformation as he journeys on a recumbent tricycle across the United States in the throes of Friedreich’s ataxia\, a life-shortening and disabling disease. Full of humor and reflection\, it’s a heroic journey of a man driven to reframe the language of disease through action and service. \nAttendees will have the opportunity to ask Kyle questions in real-time. Registration is required.
URL:https://www.sumairafoundation.org/event/meet-the-author-kyle-bryant-shifting-into-high-gear/
LOCATION:Virtual: Global
CATEGORIES:Meet The Author
ATTACH;FMTTYPE=image/png:https://www.sumairafoundation.org/wp-content/uploads/2023/03/Meet-the-Author-March-2023-1.png
END:VEVENT
END:VCALENDAR