Sports Pour Tous
2023-06-23 20:00 - 21:00 (Europe/Paris) | Virtual: France, France
Rejoignez-nous pour des échanges sur le sport adapté avec Mathieu Jousse, sportif et professionnel en sports adaptés et Emmanuel Rouchaussée,mal voyant profond et sportif amateur en sports adaptés , autour de 3 axes principaux : les différents sports que l’on peut adapter et comment, les bienfaits de la pratique du sport et les associations et sites de sports adaptés en France et en Belgique.
Retrouvez-nous le 23 juin 2023 à 20 heures.
Cet événement est soutenu par les subventions d’Horizon Therapeutics et Alexion pour l’éducation des patients.

Trial clinici per i pazienti con MOGAD ed importanza della partecipazione dei pazienti
2023-06-27 17:00 - 18:00 (Europe/Rome) | Virtual: Italy, Italy
Partecipa al nostro prossimo Webinar dal titolo: MOGAD: importanza della partecipazione dei pazienti ai trial clinici – martedì 27 giugno alle 17.00 con la dr.ssa Sara Mariotto, neurologa presso l’Università di Verona.
La dr.ssa Mariotto presenterà le ultime novità in merito ai trial clinici in corso in Italia per i pazienti con MOGAD. Discuteremo l’importanza della partecipazione dei pazienti alla ricerca clinica e la strategia di sviluppo di nuove terapie.
Chi parteciperà di persona potrà porre le proprie domande alla dr. ssa Mariotto. Il webinar verrà registrato e lo troverete sul canale YouTube della Sumaira Foundation (TSF), su Facebook e tra i video del sito TSF.
L’evento è supportato da UCB.

HCP South Africa
2023-06-27 18:00 - 19:00, 2023-07-25 18:00 - 19:00, 2023-08-29 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.

TSF's Human Collective Project Meetings
2023-06-29 20:00 - 21:00, 2023-07-06 20:00 - 21:00, 2023-07-20 20:00 - 21:00, 2023-08-03 20:00 - 21:00, 2023-08-17 20:00 - 21:00, 2023-08-31 20:00 - 21:00, 2023-09-14 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.

Het Human Collective Project
2023-06-30 19:00 - 20:00 (Europe/Amsterdam) | Virtual: Amsterdam, Netherlands
Op dinsdag 16 mei om 19:00 organiseert de Sumaira Foundation de eerste Nederlands en Vlaamse online bijeenkomst voor mensen met NMOSD of MOGAD en hun familieleden en/of dierbaren.

U bent van harte welkom om deel te nemen en ervaringen uit te wisselen en elkaar te ondersteunen in een veilige omgeving.

Aanmelden voor deze bijeenkomst kan via: ZOOM

HCP Italia
2023-07-04 17:30 - 18:30, 2023-08-01 17:30 - 18:30, 2023-09-05 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.

TSF Plauderstunde | HCP Germany
2023-07-12 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.

Le Projet Collectif Humain
2023-07-21 20:00 - 21:00, 2023-08-18 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.

TSF's Southern California Patient Day for NMOSD & MOGAD
2023-07-22 11:00 - 18:00 (America/Los_Angeles) | UCLA Meyer and Renee Luskin Conference Center, 425 Westwood Plaza, Los Angeles, CA, 90095, United States
The Sumaira Foundation is pleased to invite you to TSF’s Southern California Patient Day, a special day 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 Southern California
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

NMOSD Sieronegativa
2023-07-27 17:00 - 18:00 (Europe/Rome) | Virtual: Italy, Italy
Partecipa al nostro prossimo Webinar dal titolo: NMOSD sieronegativa – giovedì 27 luglio alle 17.00 con la dr. Elia Sechi, neurologo presso l’Università degli Studi di Sassari.
Chi parteciperà di persona potrà porre le proprie domande alla dr. Sechi. Il webinar verrà registrato e lo troverete sul canale YouTube della Sumaira Foundation (TSF), su Facebook e tra i video del sito TSF.
L’evento è supportato da Horizon Therapeutics.

Coaching Klatch: Pain vs. Suffering
2023-08-05 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.

HCP India
2023-08-15 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 Human Collective Project | Danmark
2023-08-17 19:00 - 20:00, 2023-09-20 19:00 - 20:00 (Europe/Amsterdam) | Virtual: Danmark, Denmark

Cómo Elegimos el Tratamiento de NMOSD en LATAM Considerando el Acceso de los Pacientes
2023-08-25 16:00 - 17:00 (America/Mexico_City)
Está invitado a asistir a la videoconferencia “Cómo Elegimos el Tratamiento de NMOSD en LATAM Considerando el Acceso de los Pacientes” el viernes 25 de agosto a las 7:00 pm hora Argentina // 4:00 pm hora central México, con el Dr. Edgar Carnero Contentti, Neurólogo, Profesor de Neurología de la Universidad de Buenos Aires, Unidad de Neuroinmunología, Departamento de Neurociencias, Hospital Alemán, Buenos Aires, Argentina.
Los asistentes conectados a la videoconferencia tendrán la oportunidad de hacer preguntas en vivo al Dr. Carnero Contentti. Esta conferencia web se grabará y estará disponible para su reproducción, tanto en la biblioteca multimedia, como en el canal de YouTube de The Sumaira Foundation.
Este evento educativo es posible gracias a una subvención para la educación del paciente de Horizon Therapeutics.

Trattamenti per NMOSD e MOGAD in Italia
2023-08-29 16:00 - 17:00 (Europe/Rome) | Virtual: Italy, Italy
Partecipa al nostro prossimo Webinar dal titolo: Trattamenti per NMOSD e MOGAD in Italia – martedì 27 agosto alle 16:00 con il dott. Raffaele Iorio, neurologo del Policlinico Gemelli.
Chi parteciperà di persona potrà porre le proprie domande alla dr. Iorio. Il webinar verrà registrato e lo troverete sul canale YouTube della Sumaira Foundation (TSF), su Facebook e tra i video del sito TSF.
L’evento è supportato da Horizon Therapeutics.

Coaching Klatch: A New Way to Think About Change
2023-09-09 10:00 - 11:00 (America/New_York) | Virtual: United States, United States

2023 RARE Patient Advocacy Summit
2023-09-19 - 2023-09-20
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.
