The Sumaira Foundation

Public Meeting: FDA Rare Disease Day 2023
2023-02-27 09:00 - 16:45 (America/New_York) | Virtual: United States, United States
Webcast Information
Join the webcastExternal Link Disclaimer to watch the livestream on February 27 beginning at 9 a.m. (ET).
Summary
FDA will host Rare Disease Day, a virtual public meeting, on February 27, 2023, 9:00 am – 4:45 pm ET, in global observance of Rare Disease Week. This year’s theme is “Intersections with Rare Diseases – A patient focused event.” Participants will have the unique opportunity to:
Hear directly from the FDA on initiatives to advance medical product development for rare diseases.
Engage with the FDA to provide your perspectives as a patient, caregiver or family member.
Understand considerations and challenges associated with clinical trials in small populations.
Hear from medical students on rare disease education for medical professionals.
Public Docket
Stakeholders are invited to provide their perspectives on the discussion questions through the public docket. All comments must be identified with the docket number FDA-2022-N-3072-0001 through April 7, 2023.
Contact
OOPDOrphanEvents@fda.hhs.gov | 301-796-7634
Office of Clinical Policy and Programs, Office of Orphan Products Development

TSF's Human Collective Project Meetings
2023-02-16 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.

NMOSD, MOGAD und MS: Gemeinsamkeiten und Unterschiede
2023-02-13 12:00 - 13:30 (America/New_York) | Virtual: Germany, Germany
Herzliche Einladung zum ersten Live-Webinar “NMOSD, MOGAD und MS: Gemeinsamkeiten und Unterschiede” der Sumaira-Foundation für die deutschsprachige NMOSD & MOGAD Community am Montag, den 13. Februar, mit Dr. Joachim Havla, Neurologe und NMOSD/MOGAD-Spezialist an der Ludwig-Maximilians-Universität München. Dr. Havla wird die Gemeinsamkeiten und Unterschiede zwischen NMOSD, MOGAD und die Abgrenzung gegenüber der Multiplen Sklerose erläutern. Fragen in Echtzeit sind mehr als willkommen!

TSF's Human Collective Project | Global Meetings
2023-02-11 10:00 - 11:00 (America/New_York)
These meetings are a safe space led by the community for the community. No judgment; only love & support. (This meeting will be conducted in English)
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 Plauderstunde | HCP Germany
2023-02-08 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.

TSF’s Human Collective Project | Danmark
2023-02-08 19:00 - 20:00, 2023-01-25 19:00 - 20:00 (Europe/Amsterdam) | Virtual: Danmark, Denmark

TSF's Human Collective Project Meetings
2023-02-02 20:00 - 21:00, 2023-01-19 20:00 - 21:00 (America/New_York) | Virtual: Danmark, Denmark

Young People’s Webinar | Connecting MS, NMOSD & MOGAD: Sharing Knowledge and Experiences to Strengthen Our Communities
2023-01-26 17:00 - 18:00 (Europe/Brussels) | Virtual: Danmark, Denmark
There are a number of different autoimmune disorders with similar features to Multiple Sclerosis (MS), such as neuromyelitis optica spectrum disorder (NMOSD) and myelin oligodendrocyte glycoprotein antibody disorder (MOGAD).
These diseases share striking similarities that ultimately affect the way in which our communities understand and manage the diagnosis. Hence, it is of utmost importance for young people with MS to learn more about them as well as connect with the communities as they share similar experiences and questions for the future.
The webinar will focus on:
– Sharing Knowledge, where Dr. Sara Mariotto‬ will introduce NMOSD & MOGAD as well as describe the similarities and differences between MS, NMOSD & MOGAD from an expert perspective.
– Sharing Experiences, where Sumaira Ahmed will share her own NMOSD story and how she built communities of support for patients and their caregivers by developing the Sumaira Foundation.

TSF's Human Collective Project Global Meetings
2023-01-14 10:00 - 11:00 (America/New_York) | Virtual: Danmark, Denmark
We’re excited to bring NMOSD/MOGAD patients + caregivers from around the globe together for our 1st global support group meeting of 2023!
These meetings are a safe space led by the community for the community. No judgment; only love & support. (This meeting will be conducted in English)
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 Plauderstunde | HCP Germany
2023-01-11 19:30 - 20:30 (Europe/Amsterdam) | Virtual: Danmark, Denmark
The Human Collective Project (HCP) is TSF’s support group meetings offered to anyone who has been affected/impacted by NMOSD/MOG-AD. The program came into existence during the height of the COVID-19 pandemic in 2020 when most NMOSD/MOG-AD 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/MOG-AD 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.

Understanding Clinical Trials for MOGAD & the Importance of Patient Participation
2023-01-06 09:00 - 10:00 (America/New_York) | Virtual: Danmark, Denmark
You’re invited to join TSF’s 1st live webinar of 2023 – Understanding Clinical Trials for MOGAD & the Importance of Patient Participation – on Friday, January 6th featuring Dr. Michael Levy who will share updates about ongoing clinical trials for patients living with MOGAD. Additionally, we will discuss the importance and value of patient participation in clinical research and trials for novel therapies. Attendees will have the opportunity to ask Dr. Levy questions in real time.
This webinar will be recorded and available for replay on TSF’s Facebook and YouTube libraries.
This webinar is sponsored by UCB.

TSF's Human Collective Project Meetings
2023-01-05 20:00 - 21:00, 2022-12-22 20:00 - 21:00 (America/New_York) | Virtual: Danmark, Denmark
The Human Collective Project (HCP) is TSF’s support group meeting offered to anyone who has been affected/impacted by NMOSD/MOG-AD. The program came into existence during the height of the COVID-19 pandemic in 2020, when most NMOSD/MOG-AD 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/MOG-AD 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.

SM, NMOSD e MOGAD: Somiglianze e Differenze
2022-12-14 12:00 - 13:30 (America/New_York) | Virtual: Danmark, Denmark
Unisciti a noi mercoledì 14 dicembre per il 1° webinar italiano della Fondazione Sumaira con la dott.ssa Sara Mariotto, neurologa ed esperta di NMOSD/MOGAD che discuterà e risponderà alle domande sulle somiglianze e le differenze tra NMOSD e MOGAD.
I partecipanti avranno l’opportunità di porre domande alla Dr. ssa Mariotto dal vivo ed in italiano. Il webinar sarà registrato e sarà disponibile per essere rivisto sul canale YouTube e Facebook di TSF.
Questo evento è reso possibile da una sponsorizzazione per la formazione ed il supporto ai pazienti di Horizon Therapeutics.

TSF Book Club | "Being Mortal" by Atul Gawande
2022-12-13 20:00 - 21:00 (America/New_York) | Virtual: Danmark, Denmark
You’re invited to join TSF’s next book club meeting on November 29th, during which we’ll discuss “Being Mortal” by Dr. Atul Gawande.
From Atul Gawande, a book that has the potential to change medicine – and lives.

Through eye-opening research and gripping stories of his own patients and family, Gawande reveals the suffering this dynamic has produced. Nursing homes, devoted above all to safety, battle with residents over the food they can eat and the choices they are allowed to make. Doctors, uncomfortable discussing patients’ anxieties about death, fall back on false hopes and treatments that shorten lives instead of improving them. And families go along with all of it.

SRNA Young Adults Group Meeting
2022-12-03 12:00 - 17:00 (America/New_York) | Virtual: Danmark, Denmark
Join us for an online social hour hosted by Aidan M. for those in their 20’s and 30’s with ADEM, AFM, MOGAD, NMOSD, ON, or TM! Connect with others and discuss what it’s like living with a rare neuroimmune disorder during the transitions of young adulthood. Ask questions, share your stories, or just listen – everyone is welcome.
Please think of this as a virtual coffee hour, where we will have informal conversations and create community among younger folks with disorders under the SRNA umbrella. Come connect with others and discuss what it’s like living with a rare neuroimmune disorder. Ask questions, share your stories, or just listen – everyone is welcome.

NMOSD/MOGAD Global Support Group Meeting
2022-12-03 10:00 - 11:00 (America/New_York)
We are excited to launch TSF’s first-ever global Human Collective Project meeting! Join us on Saturday, December 3rd at 10 AM EST / 4 PM CET for a support group meeting with NMOSD/MOGAD patients and caregivers from all over the world.
This special monthly group will be hosted by, Candice Galvan, NMOSD Caregiver, Colorado Ambassador, and HCP Program Manager. This meeting will be conducted in English.
To register, visit https://tinyurl.com/TSFHCPglobal
