HCP Italia
2023-11-06 17:30 - 18:30, 2024-02-05 18:30 - 19:30, 2024-03-04 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.

TSF Plauderstunde | HCP Germany
2023-11-08 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.

El Proyecto Colectivo Humano
2023-11-08 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.

TSF's Human Collective Project Meetings
2023-11-09 20:00 - 21:00, 2023-11-23 20:00 - 21:00, 2023-12-07 20:00 - 21:00, 2023-12-21 20:00 - 21:00, 2024-02-15 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.

Giornata dedicata ai pazienti con NMOSD, MOGAD ed encefalite - Verona
2023-11-18 09:00 - 15:00 (Europe/Rome) | Best Western Plus Hotel Expo, Via Portogallo, 1p, Verona, Italy
TSF è lieta di invitare tutti i pazienti italiani con NMOSD, MOGAD o encefalite, i loro caregivers, ed i medici interessati a queste patologie a partecipare a questa giornata di formazione, unione e divertimento.

In collaborazione con la Dr.ssa Sara Mariotto dell’ Università di Verona, The Sumaira Foundation è lieta di invitarvi alla Giornata per pazienti, caregivers e clinici dedicata a NMOSD, MOGAD ed encefalite.
Questo evento a libera iscrizione vi permetterà di:

Incontrare pazienti italiani con NMOSD, MOGAD o encefalite, i loro caregivers ed i clinici esperti di queste patologie

Porre domande agli esperti in diretta relative alla gestione dei sintomi, le terapie, le comorbidità e molto altro

Aggiornarvi in merito alle ultime ricerche scientifiche con l’aiuto di medici esperti italiani

Fare rete e instaurare connessioni con la comunità locale dedicata a NMOSD, MOGAD ed encefalite

Il pranzo e il calore di TSF sono inclusi!

Dopo l’evento, siete tutti invitati a partecipare alla partita di calcio della nazionale italiana artisti TV vs Life Ritorno alla Vita presso lo Stadio di Via Sogare 9c di Verona, una partita di beneficenza per la ricerca in Neuroimmunologia il cui ingresso è a offerta libera.

Non vediamo l’ora di incontrarvi!

The Sumaira Foundation team

L’evento è reso possibile grazie al supporto di UCB.

Nouveautés de la Recherches: ECTRIMS 2023
2023-11-20 18:00 - 19:00 (Europe/Paris) | Virtual: France, France
TSF France vous invite à rejoindre notre prochain webinaire mettant en vedette le Pr. Romain Marignier et Dr Julie Pique, neurologues à Hospices Civils de Lyon | Hôpital Neurologique.
Les experts présenteront les derniers résultats et développements de la recherche sur le NMOSD et le MOGAD lors de l’ECTRIMS 2023, la plus grande conférence sur la SEP, le NMOSD et le MOGAD au monde.
Cet événement est rendu possible grâce au parrainage de l’éducation des patients et au soutien d’Horizon Therapeutics.

HCP South Africa
2023-11-28 18:00 - 19:00, 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.

Online lotgenotencontact voor mensen met NMOSD of MOGAD
2023-11-30 19:00 - 20:00 (Europe/Amsterdam) | Virtual: Amsterdam, Netherlands
We wisselen ervaringen en tips uit om zo elkaar in een veilige omgeving te ondersteunen. Onderdeel van de “Human Collective Project (HCP) Meetings” van de Sumaira Foundation. Deze lotgenotencontacten worden in verschillende talen aangeboden.

Aanmelden voor deze bijeenkomst kan via: ZOOM

Demystifying NMOSD & MOGAD: An Expert Perspective for Patients
2023-12-01 08:30 - 09:30 (America/New_York) | Virtual: India, India
Have you or any of your loved ones been diagnosed with NMOSD or MOGAD and you’re looking for answers?
NMOSD and MOGAD are rare autoimmune diseases involving demyelination or inflammation of the central nervous system. They are often misdiagnosed as multiple sclerosis but are distinct diseases and require different treatment approaches.
Join Dr. Lekha Pandit, internationally recognized expert specializing in these diseases, as she breaks down NMOSD and MOGAD for patients and answers their questions live.
This first-of-its-kind webinar for Indian patients, is brought to you by The Sumaira Foundation, and was made possible through a patient education grant by Horizon Therapeutics.
This webinar will be recorded and available for replay on TSF’s Multimedia Library and YouTube channel.

Le Projet Collectif Humain
2023-12-01 19:00 - 20:00, 2024-01-05 19:00 - 20:00, 2024-02-29 20:00 - 21:00 (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.

Journée des patients et aidants pour NMOSD & MOGAD - Paris
2023-12-16 - 2023-12-17 | Villa Lemons, 5 Impasse Mousset, Paris, 75012, France
Vous êtes invités à rejoindre la 1ère Journée Patients NMOSD & MOGAD de TSF France à Paris!

Venez rencontrer des experts, suivre nos ateliers, rencontrer les différents acteurs de NMOSD et de MOGAD. Venez mettre en lumière la NMOSD et la MOGAD avec Sumaira et TSF France.

Pour vous inscrire, visitez www.tinyurl.com/TSFParis

Événement gratuit organisé par TSF France avec le soutien de Horizon Therapeutics, Alexion Pharmaceuticals et UCB.

À bientôt!
The Sumaira Foundation France (Bérengère, Fatiha, Elodie, Nelly et Emma)

Webinaire: Parler de la maladie à son entourage
2023-12-28 20:00 - 21:00 (Europe/Paris) | UT
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.

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.

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.

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

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

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.

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.

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.
