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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
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BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260115T200000
DTEND;TZID=America/New_York:20260115T210000
DTSTAMP:20260510T121315
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
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BEGIN:VEVENT
DTSTART;TZID=America/Bogota:20260119T000000
DTEND;TZID=America/Bogota:20260119T170000
DTSTAMP:20260510T121315
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
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BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260124T100000
DTEND;TZID=America/New_York:20260124T170000
DTSTAMP:20260510T121315
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
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BEGIN:VEVENT
DTSTART;TZID=Europe/Rome:20260127T203000
DTEND;TZID=Europe/Rome:20260127T213000
DTSTAMP:20260510T121315
CREATED:20260108T175644Z
LAST-MODIFIED:20260109T135048Z
UID:21028-1769545800-1769549400@www.sumairafoundation.org
SUMMARY:La terapia cannabinoide: l'importanza dell'informazione e del controllo medico
DESCRIPTION:Unisciti a noi il 27 gennaio per un webinar speciale dedicato alla terapia con cannabinoidi come opzione terapeutica valida e sicura per le malattie croniche.  \nSarà con noi Elisabetta Biavati\, donna che convive con atassia cerebellare e sindrome di Arnold Chiari\, in terapia con cannabis medica dal 2016. Elisabetta è un’attivista per i diritti delle persone in trattamento con cannabinoidi ed è stata Presidente di Associazione Pazienti Cannabis Medica Aps. \nDurante il webinar\, Elisabetta condividerà la sua esperienza personale e fornirà informazioni fondamentali per i pazienti\, tra cui: \n\nla differenza tra uso ricreativo e uso terapeutico basato su evidenze scientifiche\ni farmaci a base di cannabis prescrivibili secondo il Decreto Lorenzin (Legge 119/2017)\nla copertura delle prescrizioni da parte del Servizio Sanitario Nazionale\nl’importanza della supervisione medica e le interazioni con altre sostanze\ni possibili effetti collaterali della terapia con cannabinoidi\nl’importanza della formazione dei medici\n\nPartecipa a questo approfondimento: i partecipanti in diretta potranno porre domande a Elisabetta in tempo reale. Il webinar sarà registrato e reso disponibile in replay. \nQuesto programma è reso possibile grazie al supporto di Amgen e Alexion.
URL:https://www.sumairafoundation.org/event/la-terapia-cannabinoide-limportanza-dellinformazione-e-del-controllo-medico/
LOCATION:Virtual: Italy\, Italy
CATEGORIES:From The Experts,TSF Webinar
ATTACH;FMTTYPE=image/png:https://www.sumairafoundation.org/wp-content/uploads/2026/01/Veronique-Carrette.png
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