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DTSTART;TZID=Europe/Paris:20250303T140000
DTEND;TZID=Europe/Paris:20250303T150000
DTSTAMP:20260531T191014
CREATED:20250303T231035Z
LAST-MODIFIED:20250303T231035Z
UID:18897-1741010400-1741014000@www.sumairafoundation.org
SUMMARY:Le Projet Collectif Humain (HCP) | Français
DESCRIPTION:The Human Collective Project (HCP) est la réunion du groupe de soutien de TSF offerte à toute personne affectée par la NMOSD ou la MOGAD. Le programme a vu le jour au plus fort de la pandémie de COVID-19 en 2020\, lorsque la plupart des patients NMOSD/MOGAD se sentaient particulièrement isolés et vulnérables au coronavirus en tant que patient dit “vulnérable” de part son traitement contre ma maladie.\nL’isolement que beaucoup d’entre nous avons vécu a révélé un grand besoin et une opportunité pour nous de nous connecter de manière significative pour nous offrir notre soutien les uns aux autres. \nDepuis 2020\, nous avons élargi le programme pour offrir plus de sessions dans plusieurs zones géographiques afin de garantir que tous les membres des communautés NMOSD/MOGAD se sentent accueillis et inclus. Comme nous le disons toujours\, HCP est un excellent moyen de rencontrer d’autres personnes dans des circonstances similaires dans cette communauté rare; c’est un espace sûr pour rire\, pleurer\, évacuer\, partager les victoires\, etc. Ce programme est piloté et dirigé par les patients et soignants ambassadeurs de TSF dans le monde entier.
URL:https://www.sumairafoundation.org/event/le-projet-collectif-humain-hcp-francais-5/
LOCATION:Virtual: France\, France
CATEGORIES:Support Group,TSF France
ATTACH;FMTTYPE=image/png:https://www.sumairafoundation.org/wp-content/uploads/2025/03/45d9402e-d5a0-4a15-86fb-28197c367e32.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250306T140000
DTEND;TZID=America/New_York:20250306T153000
DTSTAMP:20260531T191014
CREATED:20250215T144137Z
LAST-MODIFIED:20250215T144137Z
UID:18866-1741269600-1741275000@www.sumairafoundation.org
SUMMARY:Navigating the Transition from Pediatric to Adult Neuroimmunology Care
DESCRIPTION:We’re calling pediatric patients and their parents/caregivers to join us on March 6th for a special webinar featuring experts from Children’s National Hospital and George Washington University. \nThis webinar will provide an overview of the transition from pediatric to adult medical care\, featuring insights from a pediatric neurologist\, social worker\, and a neuropsychologist. \nTopics will include maintaining continuity of care\, managing complex medical conditions\, self-advocacy in healthcare settings\, and addressing social and emotional considerations. The discussion aims to support patients\, families\, and caregivers in navigating this important transition effectively.
URL:https://www.sumairafoundation.org/event/navigating-the-transition-from-pediatric-to-adult-neuroimmunology-care/
LOCATION:Virtual: United States\, United States
CATEGORIES:From The Experts
ATTACH;FMTTYPE=image/png:https://www.sumairafoundation.org/wp-content/uploads/2025/02/Childrens-National.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250313T200000
DTEND;TZID=America/New_York:20250313T210000
DTSTAMP:20260531T191014
CREATED:20250303T234515Z
LAST-MODIFIED:20250303T234515Z
UID:18908-1741896000-1741899600@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. \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-human-collective-project-meetings-39/
LOCATION:Virtual: United States\, United States
CATEGORIES:Support Group,TSF Programming
ATTACH;FMTTYPE=image/png:https://www.sumairafoundation.org/wp-content/uploads/2024/10/Human-Collective-Project-Web-Banner.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250313T200000
DTEND;TZID=America/New_York:20250313T210000
DTSTAMP:20260531T191014
CREATED:20250505T160252Z
LAST-MODIFIED:20250505T160252Z
UID:19259-1741896000-1741899600@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. \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-human-collective-project-meetings-40/
LOCATION:Virtual: United States\, United States
CATEGORIES:Support Group,TSF Programming
ATTACH;FMTTYPE=image/png:https://www.sumairafoundation.org/wp-content/uploads/2024/10/Human-Collective-Project-Web-Banner.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Africa/Bangui:20250317T180000
DTEND;TZID=Africa/Bangui:20250317T193000
DTSTAMP:20260531T191014
CREATED:20250227T205412Z
LAST-MODIFIED:20250317T151413Z
UID:18883-1742234400-1742239800@www.sumairafoundation.org
SUMMARY:NMOSD in sub-Saharan Africa
DESCRIPTION:In honor of NMO Awareness Month 2025\, TSF is excited to present “NMOSD in Sub-Saharan Africa\,” a live event exploring the landscape of NMOSD and other rare neuroimmunological disorders. \nJoin us on Monday\, March 17th\, for an exclusive webinar featuring Dr. Mashina Chomba (Zambia)\, Dr. Fiifi Duodu (Ghana)\, Dr. Pearl Thomas (South Africa)\, and Dr. Cynthia Wendo (Kenya). The experts will provide insights and answer questions about the prevalence and incidence of NMOSD\, diagnostics\, available treatments\, immunizations\, clinical trials\, and more. We invite patients\, caregivers\, clinicians\, researchers\, and advocates from around the world to attend. \nLive participants will have the opportunity to ask questions directly to the experts. The webinar will be recorded and made available for replay on TSF’s YouTube channel. \nRegistration is required.
URL:https://www.sumairafoundation.org/event/nmosd-in-sub-saharan-africa/
LOCATION:Virtual: South Africa\, South Africa
CATEGORIES:From The Experts
ATTACH;FMTTYPE=image/jpeg:https://www.sumairafoundation.org/wp-content/uploads/2025/02/NMOSD-in-Sub-Saharan-Africa-1280-x-720-px.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Bogota:20250320T190000
DTEND;TZID=America/Bogota:20250320T200000
DTSTAMP:20260531T191014
CREATED:20250303T232518Z
LAST-MODIFIED:20250303T232518Z
UID:18903-1742497200-1742500800@www.sumairafoundation.org
SUMMARY:El proyecto colectivo humano (HCP) | Español
DESCRIPTION:El Human Collective Project (HCP) es la reunión del grupo de apoyo de TSF que se ofrece a cualquier persona que haya sido afectada/impactada por NMOSD/MOG-AD. El programa nació durante el apogeo de la pandemia de COVID-19 en 2020\, cuando la mayoría de los NMOSD/MOG-AD se sentían particularmente aislados y vulnerables al coronavirus como miembros de la sociedad inmunodeprimidos/inmunodeprimidos. El aislamiento que muchos de nosotros experimentamos reveló una gran necesidad y oportunidad para conectarnos de una manera significativa y ofrecernos apoyo unos a otros. \nDesde 2020\, hemos ampliado el programa para ofrecer más sesiones en múltiples geografías para garantizar que todos en las comunidades NMOSD/MOG-AD se sientan bienvenidos e incluidos. Como siempre decimos\, HCP es una excelente manera de conocer a otras personas en circunstancias similares en esta rara comunidad; es un espacio seguro para reír\, llorar\, desahogarse\, compartir victorias\, etc. Este programa está impulsado y dirigido por pacientes y cuidadores embajadores de TSF en todo el mundo.
URL:https://www.sumairafoundation.org/event/el-proyecto-colectivo-humano-hcp-espanol-2/
LOCATION:Virtual: Colombia\, Colombia
CATEGORIES:Support Group
ATTACH;FMTTYPE=image/png:https://www.sumairafoundation.org/wp-content/uploads/2024/04/Spanish-1.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Paris:20250324T200000
DTEND;TZID=Europe/Paris:20250324T210000
DTSTAMP:20260531T191014
CREATED:20250304T230139Z
LAST-MODIFIED:20250304T230200Z
UID:18958-1742846400-1742850000@www.sumairafoundation.org
SUMMARY:La gestion de la fatigue dans la NMOSD et la MOGAD
DESCRIPTION:La fatigue et la fatigabilité touchent toutes les personnes souffrant de NMOSD et de MOGAD. Cela reste la première cause de baisse de la qualité de vie mais est assez difficile à gérer. Imprévisible\, durable\, la fatigue n’est pas gérable avec une pilule miracle. Pour aborder ce sujet nous serons en compagnie du docteur Nathalie Moreau\, Cheffe de service de l’unité de Médecine Physique et de Réadaptation de l’Hôpital Léopold Bellan à Paris et de Véronique Carrette\, sophrologue et hypnothérapeute. Vous pourrez poser vos questions à nos intervenantes. Ce programme est rendu possible grâce au soutien d’Amgen.
URL:https://www.sumairafoundation.org/event/la-gestion-de-la-fatigue-dans-la-nmosd-et-la-mogad/
LOCATION:Virtual: France\, France
CATEGORIES:From The Experts
ATTACH;FMTTYPE=image/jpeg:https://www.sumairafoundation.org/wp-content/uploads/2025/03/Veronique-Carrette-et-Nathalie-Moreau.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250325T190000
DTEND;TZID=America/New_York:20250325T200000
DTSTAMP:20260531T191014
CREATED:20250311T170125Z
LAST-MODIFIED:20250311T170125Z
UID:18994-1742929200-1742932800@www.sumairafoundation.org
SUMMARY:Immunizations for the Immunocompromised
DESCRIPTION:Vaccines play a crucial role in protecting immunocompromised patients\, as their weakened immune systems make them more vulnerable to infections. Vaccines also help prevent the spread of contagious diseases to others. For immunocompromised patients\, the risk of severe illness or complications from diseases such as flu\, pneumonia or COVID-19 is significantly higher\, making vaccination a key preventative measure. Join us for an insightful discussion on March 25th about immunizations for the immunocompromised led by Dr. Elias Sotirchos\, neuroimmunologist and Assistant Professor of Neurology at The Johns Hopkins University School of Medicine. Attendees joining live will have the opportunity to ask Dr. Sotirchos questions about vaccines and immunizations in real time. This program is made possible with support from Alexion.
URL:https://www.sumairafoundation.org/event/immunizations-for-the-immunocompromised/
LOCATION:Virtual: United States\, United States
CATEGORIES:From The Experts
ATTACH;FMTTYPE=image/png:https://www.sumairafoundation.org/wp-content/uploads/2025/03/Elias-Sotirchos.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Africa/Johannesburg:20250326T190000
DTEND;TZID=Africa/Johannesburg:20250326T200000
DTSTAMP:20260531T191014
CREATED:20241009T200525Z
LAST-MODIFIED:20250325T141622Z
UID:17922-1743015600-1743019200@www.sumairafoundation.org
SUMMARY:Human Collective Project | 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.
URL:https://www.sumairafoundation.org/event/human-collective-project-south-africa-10/
CATEGORIES:Support Group
ATTACH;FMTTYPE=image/png:https://www.sumairafoundation.org/wp-content/uploads/2024/04/South-Africa.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Rome:20250328T173000
DTEND;TZID=Europe/Rome:20250328T193000
DTSTAMP:20260531T191014
CREATED:20250303T234021Z
LAST-MODIFIED:20250303T234326Z
UID:18905-1743183000-1743190200@www.sumairafoundation.org
SUMMARY:Il progetto collettivo umano (HCP) | Italia Per pazienti adulti
DESCRIPTION:The Human Collective Project (HCP) è l’incontro del gruppo di supporto di TSF offerto a chiunque sia stato colpito/colpito da NMOSD/MOGAD. Il programma è nato durante il culmine della pandemia di COVID-19 nel 2020\, quando la maggior parte dei NMOSD/MOGAD si sentiva particolarmente isolata e vulnerabile al coronavirus come membri della società immunosoppressi/immunocompromessi. L’isolamento che molti di noi hanno vissuto ha svelato un grande bisogno e un’opportunità per noi di connetterci in modo significativo per offrire il nostro sostegno reciproco. \nDal 2020\, abbiamo ampliato il programma per offrire più sessioni in più aree geografiche per garantire che tutti nelle comunità NMOSD/MOGAD si sentano accolti e inclusi. Come diciamo sempre\, HCP è un ottimo modo per incontrare altri in circostanze simili in questa rara comunità; è uno spazio sicuro per ridere\, piangere\, sfogarsi\, condividere vittorie\, ecc. Questo programma è guidato e guidato dagli ambasciatori di pazienti e caregiver di TSF in tutto il mondo.
URL:https://www.sumairafoundation.org/event/il-progetto-collettivo-umano-hcp-italia-per-pazienti-adulti-2/
LOCATION:Virtual: Italy\, Italy
CATEGORIES:Support Group
ATTACH;FMTTYPE=image/png:https://www.sumairafoundation.org/wp-content/uploads/2025/01/Italian.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Los_Angeles:20250329T110000
DTEND;TZID=America/Los_Angeles:20250329T170000
DTSTAMP:20260531T191014
CREATED:20250306T214916Z
LAST-MODIFIED:20250306T214916Z
UID:18965-1743246000-1743267600@www.sumairafoundation.org
SUMMARY:TSF's San Francisco Patient Day for NMOSD & MOGAD
DESCRIPTION:TSF is coming to San Francisco! \nAre you an NMOSD/MOGAD patient\, caregiver\, clinician\, nurse\, researcher and/or advocate in the Bay Area? You’re invited to our event on Saturday\, March 29th at 11 AM at Stanford University – Cardinal Hall\, hosted in collaboration with the neuroimmunology teams at Stanford and UCSF. \nJoin us for a day of education\, community and fun to: \n\nMeet local NMOSD & MOGAD patients\, caregivers and clinicians\nAsk experts questions in real time about symptom management\, treatments and therapies\, co-morbidities and more\n\n\nLearn about updates on the latest research and findings from local key opinion leaders\n\nThis in-person event is free and lunch will be served. We can’t wait to see you in San Francisco. \nThe Sumaira Foundation team
URL:https://www.sumairafoundation.org/event/tsfs-san-francisco-patient-day-for-nmosd-mogad/
LOCATION:Stanford University – Cardinal Hall\, 505 Broadway\, Redwood City\, 94063\, United States
CATEGORIES:Community Event,Patient Days
ATTACH;FMTTYPE=image/png:https://www.sumairafoundation.org/wp-content/uploads/2025/03/San-Francisco-Patient-Day-Main-Graphic.png
END:VEVENT
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