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DTSTART;TZID=America/New_York:20230202T200000
DTEND;TZID=America/New_York:20230202T210000
DTSTAMP:20260502T170130
CREATED:20221220T140720Z
LAST-MODIFIED:20230127T164807Z
UID:12099-1675368000-1675371600@www.sumairafoundation.org
SUMMARY:TSF's Human Collective Project Meetings
DESCRIPTION: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. \nSince 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.
URL:https://www.sumairafoundation.org/event/tsfs-human-collective-project-meetings-4/
LOCATION:Virtual: Danmark\, Denmark
CATEGORIES:Support Group,TSF Programming
ATTACH;FMTTYPE=image/png:https://www.sumairafoundation.org/wp-content/uploads/2022/04/Human-Collective-Project-Web-Banner.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Amsterdam:20230208T190000
DTEND;TZID=Europe/Amsterdam:20230208T200000
DTSTAMP:20260502T170130
CREATED:20230116T192049Z
LAST-MODIFIED:20230207T164924Z
UID:12435-1675882800-1675886400@www.sumairafoundation.org
SUMMARY:TSF’s Human Collective Project | Danmark
DESCRIPTION: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. \nSince 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. \n 
URL:https://www.sumairafoundation.org/event/hcp-danmark-2/
LOCATION:Virtual: Danmark\, Denmark
CATEGORIES:Support Group,TSF Programming
ATTACH;FMTTYPE=image/png:https://www.sumairafoundation.org/wp-content/uploads/2023/01/Denmark-The-Human-Collective-Project-Facebook-Cover-2.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Amsterdam:20230208T193000
DTEND;TZID=Europe/Amsterdam:20230208T203000
DTSTAMP:20260502T170130
CREATED:20230116T185626Z
LAST-MODIFIED:20230207T165313Z
UID:12404-1675884600-1675888200@www.sumairafoundation.org
SUMMARY:TSF Plauderstunde | HCP Germany
DESCRIPTION: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. \nSince 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. \n 
URL:https://www.sumairafoundation.org/event/tsf-plauderstunde-hcp-germany-2/
LOCATION:Virtual: Germany\, Germany
CATEGORIES:Support Group,TSF Programming
ATTACH;FMTTYPE=image/png:https://www.sumairafoundation.org/wp-content/uploads/2022/12/2.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20230211T100000
DTEND;TZID=America/New_York:20230211T110000
DTSTAMP:20260502T170130
CREATED:20230116T190919Z
LAST-MODIFIED:20230208T150403Z
UID:12419-1676109600-1676113200@www.sumairafoundation.org
SUMMARY:TSF's Human Collective Project | Global Meetings
DESCRIPTION: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) \nThe 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. \n 
URL:https://www.sumairafoundation.org/event/tsfs-human-collective-project-global-meetings-2/
CATEGORIES:Support Group,TSF Programming
ATTACH;FMTTYPE=image/png:https://www.sumairafoundation.org/wp-content/uploads/2023/01/HCP-Global.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20230213T120000
DTEND;TZID=America/New_York:20230213T133000
DTSTAMP:20260502T170130
CREATED:20230127T163832Z
LAST-MODIFIED:20230213T165205Z
UID:12535-1676289600-1676295000@www.sumairafoundation.org
SUMMARY:NMOSD\, MOGAD und MS: Gemeinsamkeiten und Unterschiede
DESCRIPTION: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!
URL:https://www.sumairafoundation.org/event/nmosd-mogad-und-ms-gemeinsamkeiten-und-unterschiede/
LOCATION:Virtual: Germany\, Germany
CATEGORIES:From The Experts,TSF Programming
ATTACH;FMTTYPE=image/png:https://www.sumairafoundation.org/wp-content/uploads/2023/01/2023-From-the-Experts.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20230216T200000
DTEND;TZID=America/New_York:20230216T210000
DTSTAMP:20260502T170130
CREATED:20230116T194450Z
LAST-MODIFIED:20230208T152156Z
UID:12460-1676577600-1676581200@www.sumairafoundation.org
SUMMARY:TSF's Human Collective Project Meetings
DESCRIPTION: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. \nSince 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.
URL:https://www.sumairafoundation.org/event/tsfs-human-collective-project-meetings-5/
LOCATION:Virtual: United States\, United States
CATEGORIES:Support Group,TSF Programming
ATTACH;FMTTYPE=image/png:https://www.sumairafoundation.org/wp-content/uploads/2022/04/Human-Collective-Project-Web-Banner.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20230227T090000
DTEND;TZID=America/New_York:20230227T164500
DTSTAMP:20260502T170130
CREATED:20230221T212529Z
LAST-MODIFIED:20230221T212855Z
UID:12993-1677488400-1677516300@www.sumairafoundation.org
SUMMARY:Public Meeting: FDA Rare Disease Day 2023
DESCRIPTION:Webcast Information\nJoin the webcastExternal Link Disclaimer to watch the livestream on February 27 beginning at 9 a.m. (ET). \nSummary\nFDA 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: \nHear directly from the FDA on initiatives to advance medical product development for rare diseases.\nEngage with the FDA to provide your perspectives as a patient\, caregiver or family member.\nUnderstand considerations and challenges associated with clinical trials in small populations.\nHear from medical students on rare disease education for medical professionals.\nPublic Docket\nStakeholders 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. \nContact\nOOPDOrphanEvents@fda.hhs.gov | 301-796-7634\nOffice of Clinical Policy and Programs\, Office of Orphan Products Development
URL:https://www.sumairafoundation.org/event/public-meeting-fda-rare-disease-day-2023/
LOCATION:Virtual: United States\, United States
ATTACH;FMTTYPE=image/jpeg:https://www.sumairafoundation.org/wp-content/uploads/2023/02/RDD-FDA.gov-Virtual-Public-Meeting-1600-x-900-px-intersections-2.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20230228
DTEND;VALUE=DATE:20230301
DTSTAMP:20260502T170130
CREATED:20230131T195717Z
LAST-MODIFIED:20230207T170117Z
UID:12574-1677542400-1677628799@www.sumairafoundation.org
SUMMARY:SRNA Rare Disease Day
DESCRIPTION:Join us for a Rare Disease Day celebration. Connect with others and listen in during our #RareRoundtable conversation.
URL:https://www.sumairafoundation.org/event/srna-rare-disease-day/
CATEGORIES:Partner Events
ATTACH;FMTTYPE=image/png:https://www.sumairafoundation.org/wp-content/uploads/2022/02/SRNA.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20230228T080000
DTEND;TZID=America/New_York:20230228T170000
DTSTAMP:20260502T170130
CREATED:20230221T214410Z
LAST-MODIFIED:20230221T214410Z
UID:13001-1677571200-1677603600@www.sumairafoundation.org
SUMMARY:Rare Disease Day at NIH 2023
DESCRIPTION: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 Day at NIH aims to raise awareness about rare diseases\, the people they affect\, and NIH collaborations that address scientific challenges and advance research for new treatments. \nThe goals of Rare Disease Day at NIH are to: \n\nDemonstrate the NIH commitment to helping people with rare diseases through research.\nHighlight NIH-supported rare diseases research and the development of diagnostics and treatments.\nInitiate a mutually beneficial dialogue among the rare diseases community.\nExchange the latest rare diseases information with stakeholders to advance research and therapeutic efforts.\nShine a spotlight on stories told by people living with a rare disease\, their families and their communities.\nBring together a broad audience including patients\, patient advocates\, caregivers\, health care providers\, researchers\, trainees\, students\, industry representatives and government staff.\n\nEvent Details \nRare Disease Day at NIH will be held in person at NIH Main Campus (Natcher Conference Center) on Tuesday\, Feb. 28\, 2023\, from 9 a.m. to 5 p.m. EST. There also will be a virtual livestream via NIH VideoCast with the event archived for replay afterward. The event agenda features panel discussions\, rare diseases stories\, exhibitors and scientific posters. The event is free and open to the public. \nPartners in Planning \nPlanning committee members includes representatives from the following organizations: \n\nNCATS\nNIH Clinical Center\nNational Cancer Institute\nNational Heart\, Lung\, and Blood Institute\nNational Institute on Alcohol Abuse and Alcoholism\nNational Institute of Neurological Disorders and Stroke\nRare Diseases Clinical Research Network’s Coalition of Patient Advocacy Groups\nU.S. Food and Drug Administration (FDA)\nThe Children’s Inn at NIH\nEveryLife Foundation for Rare Diseases\nNational Organization for Rare Disorders\nUnited BioSource LLC\n\nNCATS and Rare Diseases Research \nProgress in data science and an increased understanding of disease genetics lead experts to agree that more than an estimated 10\,000 rare diseases are affecting about 30 million people in the United States. Most of these people are children. In all\, nearly 10% of the U.S. population have a rare disease. Rare diseases often are difficult to diagnose — it can take years. Even after an accurate diagnosis\, treatment often is not available because fewer than 500 rare diseases have FDA-approved treatments. Research led by NCATS suggests that nationwide medical costs for individuals with rare diseases are likely as high as those faced by people with common diseases\, such as cancer and heart failure. \nNCATS is committed to using research to address the public health crisis presented by rare diseases. NCATS’ Division of Rare Diseases Research Innovation (DRDRI) facilitates and coordinates NIH-wide research activities\, which have the potential to speed development of treatments for multiple rare diseases and ultimately help more patients more quickly. Learn more about DRDRI and NCATS’ rare diseases research programs and access shareable resources to help raise awareness about rare diseases.
URL:https://www.sumairafoundation.org/event/rare-disease-day-at-nih-2023/
LOCATION:Virtual: United States\, United States
ATTACH;FMTTYPE=image/jpeg:https://www.sumairafoundation.org/wp-content/uploads/2023/02/RDD_2023_Collage_3333x1000_P31-scaled.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20230228T083000
DTEND;TZID=America/New_York:20230228T110000
DTSTAMP:20260502T170130
CREATED:20230221T185820Z
LAST-MODIFIED:20230221T185820Z
UID:12976-1677573000-1677582000@www.sumairafoundation.org
SUMMARY:2023 Ohio Rare Disease Day Event - Cleveland
DESCRIPTION:The Ohio Rare Action Network invites you to join us for\nRare Disease Day in Cleveland\nTuesday\, February 28\, 2023 at 8:30 AM\nCase Western Reserve University\, Tinkham Veale Ballroom\, 11038 Bellflower Road\, Cleveland\, OH 44106 \nYou’re invited to join patients\, caregivers\, and other rare disease advocates as we raise awareness and celebrate the rare disease community! The Ohio Rare Action Network and the Connor B. Judge Foundation will be hosting Ohio Rare Disease Day 2023 in Cleveland on Tuesday\, February 28th. Along with NORD\, The Connor B. Judge Foundation and The Sumaira Foundation\, this year’s event is also hosted and sponsored by the Research Institute for Children’s Health. \nThe event will include networking\, followed by an informational program. The program will include a series of short presentations\, which will address the challenges surrounding the diagnosis and treatment of rare diseases and lack of approved treatment options. The program will also feature the patient perspective and highlight advocacy and legislative efforts.
URL:https://www.sumairafoundation.org/event/2023-ohio-rare-disease-day-event-cleveland/
LOCATION:Case Western Reserve University\, Tinkham Veale Ballroom\, 11038 Bellflower Road\, Cleaveland\, OH\, 44106\, United States
CATEGORIES:Partner Events
ATTACH;FMTTYPE=image/jpeg:https://www.sumairafoundation.org/wp-content/uploads/2023/02/RDD_Social-Media-Assets_FB-scaled.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Brussels:20230228T100000
DTEND;TZID=Europe/Brussels:20230228T180000
DTSTAMP:20260502T170130
CREATED:20230221T210818Z
LAST-MODIFIED:20230222T204539Z
UID:12985-1677578400-1677607200@www.sumairafoundation.org
SUMMARY:MEET YOUR EXPERTS – Triff deine Experten!
DESCRIPTION:MEET YOUR EXPERTS –\nTriff deine Experten!\nZum Tag der seltenen Erkrankungen 2023\nlädt NEMOS ein zum offenen Gespräch\nWann: 28. Februar 2023\nDurchgängig zwischen\n10 und 18 Uhr\nWie: Einfach vorbeischauen!\nOnline (via Zoom) ohne Anmeldung über folgenden Link: https://bit.ly/meet-NEMOS-experts\n@Was?\nMit Expertinnen und Experten ins Gespräch kommen\,\nFragen stellen\, Gelegenheit zum offenen Austausch\,\nInfo-Schnipsel kurz nach jeder vollen StundeFür alle Betroffenen und Interessierten\nrund um die Themen NMOSD und MOGADWeitere Infos unter www.nemos-net.de\nFür Rückfragen: PatientInnen@nemos-net.de
URL:https://www.sumairafoundation.org/event/meet-your-experts-triff-deine-experten/
LOCATION:Virtual: Germany\, Germany
CATEGORIES:Partner Events
ATTACH;FMTTYPE=image/png:https://www.sumairafoundation.org/wp-content/uploads/2023/02/Untitled-Facebook-Cover.png
END:VEVENT
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