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BEGIN:VEVENT
DTSTART;TZID=Europe/Paris:20241204T200000
DTEND;TZID=Europe/Paris:20241204T210000
DTSTAMP:20260531T220227
CREATED:20241120T195511Z
LAST-MODIFIED:20241120T195716Z
UID:18421-1733342400-1733346000@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=America/New_York:20241205T130000
DTEND;TZID=America/New_York:20241205T140000
DTSTAMP:20260531T220227
CREATED:20241113T185421Z
LAST-MODIFIED:20241118T124748Z
UID:18386-1733403600-1733407200@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/Rome:20241207T110000
DTEND;TZID=Europe/Rome:20241207T170000
DTSTAMP:20260531T220227
CREATED:20241031T141605Z
LAST-MODIFIED:20241031T150931Z
UID:18260-1733569200-1733590800@www.sumairafoundation.org
SUMMARY:2° Giornata dedicata ai pazienti con NMOSD e MOGAD - Verona
DESCRIPTION:TSF è lieta di invitare tutti i pazienti italiani con NMOSD e MOGAD\, i loro caregivers\, ed i medici interessati a queste patologie a partecipare a questa giornata di formazione\, unione e divertimento. \nIn collaborazione con la Dr.ssa Sara Mariotto dell’ Università di Verona\, The Sumaira Foundation è lieta di invitarvi alla 2° Giornata per pazienti\, caregivers e clinici dedicata a NMOSD e MOGAD. \nQuesto evento a libera iscrizione vi permetterà di: \n\n\nIncontrare pazienti italiani con NMOSD e MOGAD\, i loro caregivers ed i clinici esperti di queste patologie \n\n\n\n\nPorre domande agli esperti in diretta relative alla gestione dei sintomi\, le terapie\, le comorbidità e molto altro \n\n\n\n\nAggiornarvi in merito alle ultime ricerche scientifiche con l’aiuto di medici esperti italiani \n\n\n\n\nFare rete e instaurare connessioni con la comunità locale dedicata a NMOSD e MOGAD \n\n\nIl pranzo e il calore di TSF sono inclusi! \nNon vediamo l’ora di incontrarvi! \nTSF Italia
URL:https://www.sumairafoundation.org/event/2-giornata-dedicata-ai-pazienti-con-nmosd-e-mogad-verona/
LOCATION:Crowne Plaza Verona – Fiera\, 16 Via Belgio 37135\, Verona\, Italy
CATEGORIES:Community Event,Patient Days
ATTACH;FMTTYPE=image/png:https://www.sumairafoundation.org/wp-content/uploads/2024/10/2nd-Verona-Patient-Day-2.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Amsterdam:20241211T193000
DTEND;TZID=Europe/Amsterdam:20241211T203000
DTSTAMP:20260531T220227
CREATED:20241009T180322Z
LAST-MODIFIED:20241009T180322Z
UID:17891-1733945400-1733949000@www.sumairafoundation.org
SUMMARY:TSF Plauderstunde | HCP Germany
DESCRIPTION:The Human Collective Project (HCP) is TSF’s support group meetings 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 launching in 2020\, we have expanded the program to offer more sessions and in multiple geographies to ensure that everyone in the NMOSD/MOGAD communities feel 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 around the world. \n 
URL:https://www.sumairafoundation.org/event/tsf-plauderstunde-hcp-germany-17/
LOCATION:Virtual: Germany\, Germany
CATEGORIES:Support Group,TSF Programming
ATTACH;FMTTYPE=image/png:https://www.sumairafoundation.org/wp-content/uploads/2024/10/Germany.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20241212T200000
DTEND;TZID=America/New_York:20241212T210000
DTSTAMP:20260531T220227
CREATED:20241009T181604Z
LAST-MODIFIED:20241009T182401Z
UID:17905-1734033600-1734037200@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-37/
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/Johannesburg:20241217T180000
DTEND;TZID=Africa/Johannesburg:20241217T190000
DTSTAMP:20260531T220227
CREATED:20241009T200420Z
LAST-MODIFIED:20241009T200420Z
UID:17916-1734458400-1734462000@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-7/
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/Paris:20241219T200000
DTEND;TZID=Europe/Paris:20241219T210000
DTSTAMP:20260531T220227
CREATED:20241009T195322Z
LAST-MODIFIED:20241216T171239Z
UID:17910-1734638400-1734642000@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-3/
LOCATION:Virtual: France\, France
CATEGORIES:Support Group,TSF France
ATTACH;FMTTYPE=image/png:https://www.sumairafoundation.org/wp-content/uploads/2024/02/French-2.png
END:VEVENT
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