The Sumaira Foundation

Le Projet Collectif Humain
2024-03-28 20:00 - 21:00, 2024-02-29 20:00 - 21:00, 2024-01-05 19:00 - 20:00 (Europe/Paris) | Virtual: France, France
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.
L’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.
Depuis 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.

La rééducation et la récupération dans les maladies neurologiques (SEP, NMOSD, MOGAD)
2024-03-21 19:00 - 20:00 (Europe/Paris) | Virtual: France, France
A l’occasion du mois de sensibilisation à la NMOSD, le docteur Cécile Donzé nous fait le plaisir de venir aborder avec TSF France la rééducation et la réadaptation dans les maladies neurologiques (NMOSD, Mogad et Sclérose en plaques (SEP)). Toutes ces maladies se caractérisent par l’apparition de handicaps plus ou moins visibles mais qui ne sont pas définitifs pour la plupart si on peut bénéficier d’une bonne prise en charge.
Vous pourrez profiter d’un échange avec cette spécialiste reconnue de Médecine Physique et de Réadaptation, cheffe de service au centre spécialisé de Saint-Philibert-de-Lomme. Nous aborderons les aspects pratiques et répondrons à vos questions en direct.
Ce programme est rendu possible grâce au soutien d’Alexion Pharmaceuticals.

Compreendendo as semelhanças e diferenças entre NMOSD, MOGAD e MS
2024-03-21 19:00 - 20:00 (America/Sao_Paulo) | Virtual: Brazil, Brazil
Para celebrar o Mês de Conscientização sobre NMO 2024, convidamos pacientes, cuidadores, médicos e pesquisadores de língua portuguesa a participarem do primeiro webinar português da TSF: Compreendendo as semelhanças e diferenças entre DENMO, MOGAD e EM.
Este webinar ao vivo contará com a participação do Professor Jefferson Becker, da Pontifícia Universidade Católica do Rio Grande do Sul, que descreverá as semelhanças e diferenças entre NMOSD, MOGAD e esclerose múltipla.
Os participantes do webinar ao vivo terão a oportunidade de perguntar ao Prof. Becker questões em tempo real. A sessão será gravada e disponibilizada no YouTube.
Este programa é possível com o apoio da Amgen em colaboração com a The Sumaira Foundation, BCTRIMS e NMO Brasil.

La storia e l'evoluzione di NMOSD
2024-03-20 18:00 - 19:00 (Europe/Rome) | Virtual: Italy, Italy
Per celebrare il Mese della Consapevolezza NMO 2024, TSF Italia ti invita a partecipare a un webinar molto speciale con il Professor Luca Massacesi e la Dott.ssa Sara Mariotto mercoledì 20 marzo alle 18:00 CET.
In questo webinar in formato intervista, verrà fatto un excursus storico sulla neuromielite ottica, toccando anche diversi aspetti tra cui la complessa diagnosi differenziale e le conseguenti difficoltà nelle scelte terapeutiche prima della scoperta degli anticorpi anti-AQP4, l’impatto della scoperta degli anticorpi stessi e l’apporto dei diversi criteri diagnostici. Infine, verranno discussi aspetti più recenti come la caratterizzazione patogenetica dell’NMOSD facendo accenno anche alla diagnosi differenziale con malattie di più recente identificazione e le ultime strategie terapeutiche.
I partecipanti all’evento dal vivo avranno l’opportunità di porre domande agli esperti. Questo webinar sarà registrato e sarà disponibile per la riproduzione sul canale YouTube e sulla libreria multimediale di TSF.
Questo programma è reso possibile grazie al supporto di Amgen.

El Proyecto Colectivo Humano
2024-03-19 19:30 - 20:30, 2024-02-19 19:30 - 20:30 (America/Bogota) | Virtual: Colombia, Colombia
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.
Desde 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.

Was Betroffene über NMOSD und MOGAD wissen sollten
2024-03-19 19:00 - 20:00 (Europe/Berlin) | Virtual: Germany, Germany
Sie sind zum kommenden Webinar von TSF Deutschland eingeladen: Was Betroffene über NMOSD und MOGAD wissen sollten.
Besuchen Sie uns am Dienstag, den 19. März um 19:00 Uhr MEZ zu einer aufschlussreichen Diskussion mit Dr. Joachim Havla (Ludwig-Maximilians-Universität München) über alles, was Sie über NMOSD und MOGAD wissen müssen!
Teilnehmer des Live-Webinars haben die Möglichkeit, Dr. Havla Fragen zu stellen. Dieses Webinar wird aufgezeichnet und kann auf dem YouTube-Kanal und der globalen Website von TSF wiedergegeben werden.
Dieses Programm wird mit Unterstützung von Amgen ermöglicht. Eine Anmeldung ist erforderlich.

Verleden, heden en toekomst van behandelingen voor NMOSD en MOGAD
2024-03-18 19:00 - 20:00 (Europe/Amsterdam) | Virtual: Amsterdam, Netherlands
In deze webinar bespreken we de snel veranderende kennis over immuuntherapie bij NMOSD en MOGAD. Welke behandelingen gebruiken we nu? Welke nieuwe behandelingen zijn recent goedgekeurd? En wat heeft de toekomst in petto aan mogelijke innovatieve behandelingsopties?
Prof. Dr. Barbara Willekens, Universitair Ziekenhuis Antwerpen en Universiteit Antwerpen, België en dr. Beatrijs Wokke, Erasmus Medisch Centrum Rotterdam, Nederland, loodsen u door het complexe behandel-landschap van deze zeldzame ziekten.
Deelnemers aan het live webinar krijgen de mogelijkheid om vragen te stellen aan de experts. Dit webinar wordt opgenomen en kan worden afgespeeld op het YouTube-kanaal en de multimediabibliotheek van TSF.
Dit programma wordt mogelijk gemaakt met steun van Amgen.

TSF's Human Collective Project Meetings
2024-03-14 20:00 - 21:00, 2024-02-15 20:00 - 21:00, 2023-12-21 20:00 - 21:00 (America/New_York) | Virtual: United States, United States
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.

Forståelse af ligheder og forskelle mellem NMOSD, MOGAD og MS
2024-03-14 16:00 - 17:00 (Europe/Copenhagen) | Virtual: Danmark, Denmark
Du inviteres til TSF’s første danske webinar!
Vi inviterer dansktalende patienter, plejere, klinikere, forskere og fortalere til at deltage i vores webinar – Forståelse af ligheder og forskelle mellem NMOSD, MOGAD og MS – med prof. Nasrin Asgari, neurolog ved Syddansk Universitet.
Deltagere, der vil deltage i live-begivenheden, vil have mulighed for at stille spørgsmål til prof. Asgari. Dette webinar vil blive optaget og tilgængeligt til afspilning på TSF’s YouTube-kanal og multimediebibliotek.
Dette program er gjort muligt med støtte fra Amgen.

TSF Plauderstunde | HCP Germany
2024-03-13 19:30 - 20:30, 2024-02-14 19:30 - 20:30 (Europe/Amsterdam) | Virtual: Germany, Germany
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.
Since 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.

TSF's New England Patient Day for NMOSD & MOGAD
2024-03-09 11:00 - 17:00 (America/New_York) | Mass General Brigham, 399 Revolution Drive, Somerville, MA, 02145, United States
Are you an NMOSD/MOGAD patient, caregiver, clinician, nurse, researcher and/or advocate in New England? You’re invited!
In collaboration with Dr. Michael Levy at Mass General Hospital, The Sumaira Foundation is pleased to invite you to TSF’s New England Patient Day, a special day dedicated to NMOSD & MOGAD patients, caregivers, clinicians and researchers.
Join us for a day of education, community, and fun where you’ll:

Meet NMOSD & MOGAD patients, caregivers and clinicians from New England
Ask experts questions in real time about symptom management, treatments and therapies, co-morbidities and more

Learn about updates on the latest research and findings from local key opinion leaders

Make connections and engage in meaningful discussions with the local NMOSD/MOGAD community

This is a free event and lunch will be served.
We’re excited to meet you!
The Sumaira Foundation team

TSF’s Human Collective Project | Danmark
2024-03-06 19:00 - 20:00, 2024-02-07 19:00 - 20:00 (Europe/Amsterdam) | Virtual: Danmark, Denmark

HCP Turkey
2024-03-05 19:30 (Europe/Istanbul) | virtual: Turkey, Turkey
Sumaira fonu olarak sizi aylık (hcp) zoom toplantimiza davet ediyoruz. Aşağıdaki belirtilmiş olan linke tıklayarak
Kaydınızı oluşturabilirsiniz
Sumaira foundation adına
Saygılarımla
Fatih Şen

HCP Italia
2024-03-04 18:30 - 19:30, 2024-02-05 18:30 - 19:30 (Europe/Rome) | Virtual: Italy, Italy
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.
Dal 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.

Myths & Facts - Family Planning Considerations for NMOSD & other rare neurological conditions
2024-03-01 10:00 - 11:00 (America/New_York) | Virtual: Global
To celebrate NMO Awareness Month 2024, The Sumaira Foundation invites you to join an insightful discussion about an important topic: Family Planning.
Join 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.
This 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.
This program is made possible with support from AstraZeneca.

HCP South Africa
2024-02-27 18:00 - 19:00 (Africa/Johannesburg) | Virtual: South Africa, South Africa
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.

Iranian Insights: NMOSD & MOGAD - Case discussions & lecture series
2024-02-11 19:00 - 20:00 (Asia/Tehran) | Virtual: Iran, Iran, Islamic Republic of
TSF is pleased to launch Iranian Insights: NMOSD & MOGAD Case Discussion + Lecture Series.
We invite clinicians & researchers to join the discussions led by experts from Iran and around the world.
This series is being organized by Dr. Sara Samadzadeh, Dr. Masoud Majed, and Dr. Mohammad Ali Sahraian.

Pautas de rehabilitación después de una recaída de NMOSD
2024-02-08 19:00 - 20:00 (America/Bogota) | Virtual: Colombia, Colombia
Acompáñanos al primer webinar desde Colombia el próximo jueves 8 de febrero a las 7 pm COT. Jeimi Rodriguez fisioterapeuta y especialista en neuro rehabilitación, nos contará las pautas, desde el punto de vista de la fisioterapia, después de una recaída de NMOSD.
Los asistentes que se unan al seminario web en vivo tendrán la oportunidad de hacer preguntas. La sesión se grabará y estará disponible para su reproducción en el canal de YouTube y en el sitio web global de TSF.
Este programa es posible gracias al apoyo de Amgen.

HCP Turkey
2024-02-05 19:30 (Europe/Istanbul) | virtual: Turkey, Turkey
Sumaira Foundation olarak düzenleyeceğimiz ilk toplantımıza sizi davet etmekten mutluluk youyuyoruz. Toplantı Tarihi: 5 Şubat, Saat: 17:30 (Türkiye saati). Toplantı Zoom üzerinden gerçekleştirilecektir. Lütfen aşağıdaki bağlantıyı kullanarak katilin

Les troubles urinaires dans les maladies neurologiques (SEP, NMOSD, MOGAD)
2024-02-02 14:00 - 15:00 (Europe/Paris) | Virtual: France, France
Souffrez-vous de symptômes urinaires dus à votre pathologie neurologique?
Nous vous invitons à rejoindre notre prochain webinaire avec le Dr Sarah Gaillet (urologue – Assistance Publique Hôpitaux de Marseille) et Lucile DEVESA (infirmière).
Quelle prise en charge de ces troubles? Quelles solutions possibles? Discutons – en avec nos spécialistes.
Cet événement est rendu possible grâce au parrainage de l’éducation des patients et au soutien d’Amgen et Alexion Pharmaceuticals.

TSF's Human Collective Project Meetings | Cannabis
2024-01-04 20:00 - 21:00 (America/New_York) | Virtual: United States, United States
We’re excited to kick off 2024 with a conversation that is of growing importance but a topic many people shy away from discussing publicly… CANNABIS!
Join Sumaira on Thursday, January 4th at 8PM EST for an open and honest discussion about the use of medical cannabis in the setting of rare diseases.
This is a judgment-free safe space where we will learn from each others’ experiences. We invite patients, caregivers, clinicians and researchers to join this important conversation.

Webinaire: Parler de la maladie à son entourage
2023-12-28 20:00 - 21:00 (Europe/Paris)
Comment parler de la maladie à son entourage?
Rejoignez TSF France pour son dernier webinaire de l’année le 28 décembre avec Emilie Leta, Psychologue diplômée d’état.
Ce programme d’éducation des patients est rendu possible grâce au soutien d’Alexion Therapeutics.
