The Sumaira Foundation

TSF's Human Collective Project Meetings
2023-12-21 20:00 - 21:00, 2023-12-07 20:00 - 21:00, 2023-11-23 20:00 - 21:00, 2023-11-09 20:00 - 21:00, 2023-10-26 20:00 - 21:00, 2023-10-12 20:00 - 21:00, 2023-09-28 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.

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)

Le Projet Collectif Humain
2023-12-01 19:00 - 20:00, 2023-11-03 20:00 - 21:00, 2023-09-15 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.

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.

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

HCP South Africa
2023-11-28 18:00 - 19:00, 2023-10-31 18:00 - 19:00, 2023-09-26 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.

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.

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.

El Proyecto Colectivo Humano
2023-11-08 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 Plauderstunde | HCP Germany
2023-11-08 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.

HCP Italia
2023-11-06 17:30 - 18:30 (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.

HCP India
2023-11-04 11:00 - 12:00 (America/New_York) | Virtual: India, India
The Human Collective Project (HCP) is TSF’s support group meetings offered to anyone who has been affected/impacted by NMOSD or MOGAD. The program came into existence during the height of the COVID-19 pandemic in 2020 when most NMOSD and MOGAD patients 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 and languages to ensure that everyone in the NMOSD and MOGAD 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 around the world.

TSF's New York City Patient Day for NMOSD & MOGAD
2023-10-29 11:00 - 17:00 (America/New_York) | Low Memorial Library, 535 W. 116th St, New York, New York, 10027, United States
The Sumaira Foundation is pleased to invite you to TSF’s New York City Patient Day, a day exclusively dedicated to NMOSD & MOGAD patients, caregivers and clinicians.
Join us for a day of education, community, and fun where you’ll

Meet local NMOSD & MOGAD patients, caregivers and clinicians from and around New York City
Ask experts questions in real time about symptom management, treatments and therapies, comorbidities 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

PLUS! We’ll be joined by special guest and celebrity chef, Christine Ha! Christine was diagnosed with NMOSD after experiencing severe vision loss in 2003. Christine was the first blind contestant to ever appear on MasterChef and the winner of its third season in 2012. In 2023, Christine is a proud chef, writer, TV host and NMOSD advocate.
This is a free event brought to you by The Sumaira Foundation in collaboration with the Siegel Rare Neuroimmune Association (SRNA). Lunch and hugs will be served!
We’re excited to meet you!
The Sumaira Foundation team

Dia de la NMO 2023: Argentina
2023-10-28 | UT
La Asociación de Lucha contra la Esclerosis Múltiple (ALCEM), La Fundación Sumaira y NMO Argentina convocan a la actividad a realizarse el 28 de octubre de manera virtual y con inscripción previa. Su finalidad es ampliar información sobre esta rara patología y proporcionar formación sobre el tema. Está dirigido a profesionales de la salud, pacientes y público interesado.
Este evento será coordinado por los neurólogos Edgar Carnero Contentti y Verónica Tkachuk, expertos en trastorno del espectro NMO. Además, contará con la participación de profesionales argentinos especializados e invitados internacionales, quienes abordarán temas relacionados con el diagnóstico, tratamiento de síntomas, nuevos tratamientos y futuro de la enfermedad, entre otros.
La neuromielitis óptica es una patología desmielinizante autoinmune que afecta a los nervios ópticos y a la médula espinal mediante inflamación. El neurólogo francés Eugene Devic fue quien la describió inicialmente en el año 1894 en la ciudad de Lyon, en su honor, se conmemora esta enfermedad el 24 de octubre, fecha de su nacimiento.
Entre los síntomas más frecuentes se encuentran: disminución de la agudeza visual, dolor crónico, trastorno del sueño, fatiga, déficit neurológico, trastornos sexuales, entre otros.
Desde ALCEM acompañan a pacientes con este tipo de enfermedades y resaltan la importancia de brindar información y capacitación sobre este tipo de patologías neurológicas, ya que un diagnóstico oportuno puede permitir a los pacientes tener una buena calidad de vida.

HCP DK with participation of dr. Nasrin Asgari
2023-10-26 19:00 - 20:00 (Europe/Amsterdam) | Virtual: Danmark, Denmark
Kære NMOSD og MOGAD patienter og pårørende.

Vi er glade for at invitere dig til et særligt Zoom-møde med den ansete professor-neurolog af syddansk Universitet, Dr. Nasrin Asgari.

Dr. Nasrin Asgari, en fremtrædende neurolog med omfattende ekspertise i NMOSD og MOGAD, slutter sig til os som en særlig gæst. Hendes værdifulde indsigt og erfaringer vil blive delt under mødet, og det giver en fantastisk mulighed for at lære af en af ​​feltets førende fagfolk.

Denne virtuelle samling har til formål at give støtte, information og inspiration til dem, der er ramt af NMOSD eller MOGAD

Vi opfordrer alle deltager til dele deres egne erfaringer, udveksle tips og tilbyde støtte til hinanden. Det bliver et sikkert rum, hvor vi alle kan mødes, lære og vokse som et fællesskab.

MOGAD - Pytania Pacjentów - Odpowiedzi Specjalisty
2023-10-26 15:00 - 16:00 (Europe/Warsaw) | Virtual: Poland, Poland
Po raz pierwszy w Polsce na pytania pacjentów dotyczące MOGAD odpowie dr hab. Maciej Juryńczyk, Ordynator Oddziału Neurologicznego w Szpitalu Wolskim w Warszawie, neurolog specjalizujący się w leczeniu tej rzadkiej choroby neurologicznej. Zapraszamy serdecznie do wysłuchania naszej rozmowy wszystkich zainteresowanych, a w szczególności osoby borykające się z objawami neurologicznymi i szukające diagnozy. Program ten jest możliwy dzięki wsparciu Horizon Therapeutics.

La importancia de un acercamiento multidisciplinar en NMOSD y MOGAD
2023-10-24 18:00 - 19:00 (Europe/Madrid) | Virtual: Spain, Barcelona, Spain
Está invitado a asistir a la videoconferencia: “La importancia de un acercamiento multidisciplinar en NMOSD y MOGAD”, el Martes 24 de Octubre a las 18:00 hora en España, con el Dr. Alvaro Cobo, Neurológo del Centro de Esclerosis Múltiple de Catalunya (Cemcat), Hospital Universitario Vall d’Hebrón, Barcelona, España
Tras la presentación inicial de 25 minutos, se llevará a cabo una serie de preguntas por la paciente afecta de neuromielitis óptica y colaboradora de la fundación Sumaira Foundation Gabriela Pineda- Molina.
Este seminario web es posible gracias al apoyo de Horizon Therapeutics. El patrocinio de este programa se utilizará únicamente para apoyar los esfuerzos educativos y de investigación de la Fundación Sumaira. El Cemcat participa gratuitamente sin coste ni coste alguno.

Coaching Klatch: How to Keep Medical Information Organized & Be Your Best Advocate in Healthcare
2023-10-14 10:00 - 11:00 (America/New_York) | Virtual: United States, United States
“Coaching Klatch: Moving You Forward” is a 3-part program designed to bring patients and caregivers together in a supportive community to:

learn & apply coaching concepts
acquire tools to strengthen self-advocacy
Enhance quality of day-to-day lived experiences
move forward in your life despite living with a rare disease

Led by Dr. Maggie Kang*, this 3-part coaching program is virtual and free of charge to patients and caregivers, no matter where in the world you are or what your diagnosis is!

Join us for our upcoming sessions:

Session 1 | “Pain vs. Suffering” – Saturday, August 5th at 10 AM EST / 4 PM CET / 7:30 PM IST
Session 2 | “A New Way to Think About Change” – Saturday, September 9th at 10 AM EST / 4 PM CET / 7:30 PM IST
Session 3 | “How to Keep Medical Information Organized & Be Your Best Advocate in Healthcare” – Saturday, October 14th at 10 AM EST / 4 PM CET / 7:30 PM IST

To register, visit https://tinyurl.com/TSFCoachingKlatch

*Dr. Maggie Kang is a life coach, speaker, rare disease advocate and physician. Dr. Kang became an advocate for rare diseases after her then 9-year old daughter was diagnosed with neuromyelitis optica spectrum disorder (NMOSD) in 2018.

TSF’s Human Collective Project | Danmark
2023-09-20 19:00 - 20:00 (Europe/Amsterdam) | Virtual: Danmark, Denmark

2023 RARE Patient Advocacy Summit
2023-09-19 - 2023-09-20 | UT
Each year, Global Genes convenes one of the world’s largest gatherings of rare disease patients, caregivers, advocates, healthcare professionals, researchers, partners, and allies at the RARE Patient Advocacy Summit.
