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 […]
Join us for a Rare Disease Day celebration. Connect with others and listen in during our #RareRoundtable conversation.
Rare Disease Day®(link is external) takes place worldwide, typically on or near the last day of February each year, to raise awareness among policymakers and the public about rare diseases and their impact on patients’ lives. Since 2011, NCATS and the NIH Clinical Center have sponsored Rare Disease Day at NIH as part of this global observance. Rare Disease […]
The Ohio Rare Action Network invites you to join us for Rare Disease Day in Cleveland Tuesday, February 28, 2023 at 8:30 AM Case Western Reserve University, Tinkham Veale Ballroom, 11038 Bellflower Road, Cleveland, OH 44106 You’re invited to join patients, caregivers, and other rare disease advocates as we raise awareness and celebrate the rare […]
MEET YOUR EXPERTS – Triff deine Experten! Zum Tag der seltenen Erkrankungen 2023 lädt NEMOS ein zum offenen Gespräch Wann: 28. Februar 2023 Durchgängig zwischen 10 und 18 Uhr Wie: Einfach vorbeischauen! Online (via Zoom) ohne Anmeldung über folgenden Link: https://bit.ly/meet-NEMOS-experts @Was? Mit Expertinnen und Experten ins Gespräch kommen, Fragen stellen, Gelegenheit zum offenen Austausch, Info-Schnipsel […]
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 […]
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 […]
We’re excited to bring NMOSD/MOGAD patients + caregivers from around the globe together for our global support group meeting in 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 […]
Rejoignez-nous le mardi 14 mars pour le prochain webinaire "From the Experts" de TSF en français avec Dr. Kumaran DEIVA, neuro-pédiatre à Paris, qui parlera et répondra aux questions sur la NMOSD pédiatrique et la MOGAD. Les participants auront la possibilité de poser des questions au Dr Deiva en direct et en français. Le webinaire […]
You're invited to join TSF's next book club meeting on March 14th , during which we'll discuss "Shifting Into High Gear" by Kyle Bryant. Shifting Into High Gear charts the course of Kyle Bryant's transformation as he journeys on a recumbent tricycle across the United States in the throes of Friedreich's ataxia, a life-shortening and disabling disease. […]
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 […]
Neem vrijdag 17 maart van 20.00-21.00 uur deel aan het allereerste Nederlandstalige webinar “In gesprek met deskundigen” (“From the Experts”). Dit webinar wordt georganiseerd door de Sumaira Foundation. Dr Barbara Willekens zal spreken over overeenkomsten en verschillen tussen NMOSD, MOGAD en MS. Dr. Willekens is als neurologe verbonden aan het UZA, het Universitair Ziekenhuis Antwerpen. […]
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 […]
Join autoimmune patient advocates nationwide on March 29, 2023, for the National Coalition of Autoimmune Patient Groups’ first virtual Congressional Fly-in Day. Advocates will meet virtually with legislators and staff to discuss important issues, including improving patient access and research funding. Whether you’re a veteran advocate or looking to get involved in legislative advocacy for […]
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 […]
Op dinsdag 31 maart 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 […]
TSF is inviting all NMOSD/MOGAD patients, caregivers, friends and family in Texas to join us for an exclusive meetup! In collaboration with Dr. Benjamin Greenberg at UT Southwestern Medical Center, The Sumaira Foundation is organizing a special event dedicated to NMOSD/MOGAD patients, caregivers and clinicians on Saturday, April 1st, 2023 at the Marriott Dallas Uptown. […]
