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X-WR-CALDESC:Events for The Sumaira Foundation
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DTSTART;TZID=Europe/Berlin:20260307T100000
DTEND;TZID=Europe/Berlin:20260307T170000
DTSTAMP:20260419T041255
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
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BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260212T200000
DTEND;TZID=America/New_York:20260212T210000
DTSTAMP:20260419T041255
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:20260419T041255
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:20260419T041255
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
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Africa/Johannesburg:20260128T190000
DTEND;TZID=Africa/Johannesburg:20260128T200000
DTSTAMP:20260419T041255
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:20260326T190000
DTEND;TZID=America/New_York:20260326T200000
DTSTAMP:20260419T041255
CREATED:20260302T170945Z
LAST-MODIFIED:20260313T133840Z
UID:21404-1774551600-1774555200@www.sumairafoundation.org
SUMMARY:Real-World Efficacy & Safety of NMOSD Treatments
DESCRIPTION:A recent study\, “Real‑World Efficacy and Safety of Neuromyelitis Optica Spectrum Disorder Disease‑Modifying Treatments\,” showed that in routine practice\, approved NMOSD therapies reduce relapse rates and offer better safety than older treatments\, reinforcing their value for patients. (Read the article here: https://pubmed.ncbi.nlm.nih.gov/41494145/) \nTo mark NMO Awareness Month 2026\, we’ll be joined by Dr. Shamik Bhattacharyya\, a lead author of this study\, who will discuss the benefits of FDA-approved NMOSD therapies versus non-approved first-line treatments. \nJoin us on Thursday\, March 26th at 4 PM PST / 7 PM EST. Attendees joining live will have the opportunity to participate in the live Q&A. \nThe webinar will be recorded and available for replay. Registration is required. \nThis educational program is made possible with support from Amgen and Alexion.
URL:https://www.sumairafoundation.org/event/real-world-efficacy-safety-of-nmosd-treatments/
LOCATION:Virtual: United States\, United States
CATEGORIES:From The Experts
ATTACH;FMTTYPE=image/png:https://www.sumairafoundation.org/wp-content/uploads/2026/03/Shamik-Bhattacharya.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260126T200000
DTEND;TZID=America/New_York:20260126T210000
DTSTAMP:20260419T041255
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
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