BEGIN:VCALENDAR
VERSION:2.0
PRODID:-//The Sumaira Foundation - ECPv6.15.17.1//NONSGML v1.0//EN
CALSCALE:GREGORIAN
METHOD:PUBLISH
X-WR-CALNAME:The Sumaira Foundation
X-ORIGINAL-URL:https://www.sumairafoundation.org
X-WR-CALDESC:Events for The Sumaira Foundation
REFRESH-INTERVAL;VALUE=DURATION:PT1H
X-Robots-Tag:noindex
X-PUBLISHED-TTL:PT1H
BEGIN:VTIMEZONE
TZID:America/New_York
BEGIN:DAYLIGHT
TZOFFSETFROM:-0500
TZOFFSETTO:-0400
TZNAME:EDT
DTSTART:20210314T070000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:-0400
TZOFFSETTO:-0500
TZNAME:EST
DTSTART:20211107T060000
END:STANDARD
BEGIN:DAYLIGHT
TZOFFSETFROM:-0500
TZOFFSETTO:-0400
TZNAME:EDT
DTSTART:20220313T070000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:-0400
TZOFFSETTO:-0500
TZNAME:EST
DTSTART:20221106T060000
END:STANDARD
BEGIN:DAYLIGHT
TZOFFSETFROM:-0500
TZOFFSETTO:-0400
TZNAME:EDT
DTSTART:20230312T070000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:-0400
TZOFFSETTO:-0500
TZNAME:EST
DTSTART:20231105T060000
END:STANDARD
BEGIN:DAYLIGHT
TZOFFSETFROM:-0500
TZOFFSETTO:-0400
TZNAME:EDT
DTSTART:20240310T070000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:-0400
TZOFFSETTO:-0500
TZNAME:EST
DTSTART:20241103T060000
END:STANDARD
END:VTIMEZONE
BEGIN:VTIMEZONE
TZID:Europe/Paris
BEGIN:DAYLIGHT
TZOFFSETFROM:+0100
TZOFFSETTO:+0200
TZNAME:CEST
DTSTART:20220327T010000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:+0200
TZOFFSETTO:+0100
TZNAME:CET
DTSTART:20221030T010000
END:STANDARD
BEGIN:DAYLIGHT
TZOFFSETFROM:+0100
TZOFFSETTO:+0200
TZNAME:CEST
DTSTART:20230326T010000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:+0200
TZOFFSETTO:+0100
TZNAME:CET
DTSTART:20231029T010000
END:STANDARD
BEGIN:DAYLIGHT
TZOFFSETFROM:+0100
TZOFFSETTO:+0200
TZNAME:CEST
DTSTART:20240331T010000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:+0200
TZOFFSETTO:+0100
TZNAME:CET
DTSTART:20241027T010000
END:STANDARD
END:VTIMEZONE
BEGIN:VTIMEZONE
TZID:Europe/Brussels
BEGIN:DAYLIGHT
TZOFFSETFROM:+0100
TZOFFSETTO:+0200
TZNAME:CEST
DTSTART:20220327T010000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:+0200
TZOFFSETTO:+0100
TZNAME:CET
DTSTART:20221030T010000
END:STANDARD
BEGIN:DAYLIGHT
TZOFFSETFROM:+0100
TZOFFSETTO:+0200
TZNAME:CEST
DTSTART:20230326T010000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:+0200
TZOFFSETTO:+0100
TZNAME:CET
DTSTART:20231029T010000
END:STANDARD
BEGIN:DAYLIGHT
TZOFFSETFROM:+0100
TZOFFSETTO:+0200
TZNAME:CEST
DTSTART:20240331T010000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:+0200
TZOFFSETTO:+0100
TZNAME:CET
DTSTART:20241027T010000
END:STANDARD
END:VTIMEZONE
BEGIN:VTIMEZONE
TZID:Europe/Amsterdam
BEGIN:DAYLIGHT
TZOFFSETFROM:+0100
TZOFFSETTO:+0200
TZNAME:CEST
DTSTART:20220327T010000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:+0200
TZOFFSETTO:+0100
TZNAME:CET
DTSTART:20221030T010000
END:STANDARD
BEGIN:DAYLIGHT
TZOFFSETFROM:+0100
TZOFFSETTO:+0200
TZNAME:CEST
DTSTART:20230326T010000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:+0200
TZOFFSETTO:+0100
TZNAME:CET
DTSTART:20231029T010000
END:STANDARD
BEGIN:DAYLIGHT
TZOFFSETFROM:+0100
TZOFFSETTO:+0200
TZNAME:CEST
DTSTART:20240331T010000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:+0200
TZOFFSETTO:+0100
TZNAME:CET
DTSTART:20241027T010000
END:STANDARD
END:VTIMEZONE
BEGIN:VEVENT
DTSTART;VALUE=DATE:20230329
DTEND;VALUE=DATE:20230330
DTSTAMP:20260405T190406
CREATED:20230131T173430Z
LAST-MODIFIED:20230327T143330Z
UID:12556-1680048000-1680134399@www.sumairafoundation.org
SUMMARY:2023 Virtual Legislative Lobby Day
DESCRIPTION: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 first time\, this is an incredible opportunity to make a difference for the autoimmune patient community. \nWe will be calling upon Congress to establish an Office of Autoimmunity within the Office of the Director of the National Institutes of Health. Read the letter we sent to the Senate and House Appropriations Committee encouraging them to include this in the FY2023 Appropriations bill. \nFrequently Asked Questions\nWhat is a Lobby Day? \nA fly-in or lobby day is when constituents from across the country come together to advocate to their congressional lawmakers on behalf of a common cause or interest. \nWho should participate?\nAutoimmune patients\, care partners\, family and friends\, health care professionals\, medical and scientific professionals\, and anyone with an interest in and passion for changing the future of autoimmune disease is encouraged to participate and become an advocate. \nIs there a cost to participate? \nThere is no cost to participate. \nHow will we meet with legislators and staff? \nAll virtual meetings will be conducted via Zoom or another video conference platform. \nDo I need previous advocacy experience? \nDefinitely not! We will provide training and talking points. \nHow can I prepare? \nPrior to the event\, we will hold a training session with participants. The training session will help advocates better understand how to speak to elected leaders to get their point across and will use role-playing to demonstrate. Remember: a convincing and compelling case will gain more traction than a shouting match any day. \nWe will also provide talking points and key messages as guidance. \n 
URL:https://www.sumairafoundation.org/event/2023-virtual-legislative-lobby-day/
LOCATION:Virtual: United States\, United States
CATEGORIES:Partner Events
ATTACH;FMTTYPE=image/jpeg:https://www.sumairafoundation.org/wp-content/uploads/2022/07/autoimmune-association-logo-small-square-1-e1657117688685.jpg
ORGANIZER;CN="Autoimmune Association":MAILTO:hello@autoimmune.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Paris:20230324T200000
DTEND;TZID=Europe/Paris:20230324T210000
DTSTAMP:20260405T190406
CREATED:20230320T153617Z
LAST-MODIFIED:20230320T153617Z
UID:13337-1679688000-1679691600@www.sumairafoundation.org
SUMMARY:Le Projet Collectif Humain
DESCRIPTION: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.\nL’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. \nDepuis 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.
URL:https://www.sumairafoundation.org/event/le-projet-collectif-humain/
LOCATION:Virtual: France\, France
CATEGORIES:Support Group
ATTACH;FMTTYPE=image/png:https://www.sumairafoundation.org/wp-content/uploads/2023/03/France-The-Human-Collective-Project-169-1.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Brussels:20230317T200000
DTEND;TZID=Europe/Brussels:20230317T210000
DTSTAMP:20260405T190406
CREATED:20230228T122223Z
LAST-MODIFIED:20230228T122223Z
UID:13084-1679083200-1679086800@www.sumairafoundation.org
SUMMARY:NMOSD\, MOGAD en MS: Overeenkomsten en Verschillen
DESCRIPTION: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.\nDr Barbara Willekens zal spreken over overeenkomsten en verschillen tussen NMOSD\, MOGAD en MS. \nDr. Willekens is als neurologe verbonden aan het UZA\, het Universitair Ziekenhuis Antwerpen. Ze is gespecialiseerd in Multiple Sclerose (MS) en ontstekingsziekten van het zenuwstelsel. \nDeelnemers krijgen tijdens deze LIVE presentatie de mogelijkheid om vragen te stellen aan Dr. Willekens. Het webinar zal worden opgenomen en is later te bekijken via www.sumairafoundation.org en via het YouTubekanaal van de Sumaira Foundation. \nDit gratis webinar wordt mogelijk gemaakt door subsidie van het “patient education grant” programma van Horizon Therapeutics.
URL:https://www.sumairafoundation.org/event/nmosd-mogad-en-ms-overeenkomsten-en-verschillen/
LOCATION:Virtual: Global
CATEGORIES:From The Experts
ATTACH;FMTTYPE=image/png:https://www.sumairafoundation.org/wp-content/uploads/2023/02/Barbara-Willekens.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20230316T200000
DTEND;TZID=America/New_York:20230316T210000
DTSTAMP:20260405T190406
CREATED:20230116T194549Z
LAST-MODIFIED:20230315T213219Z
UID:12464-1678996800-1679000400@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-7/
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:20230314T190000
DTEND;TZID=America/New_York:20230314T200000
DTSTAMP:20260405T190406
CREATED:20230131T161203Z
LAST-MODIFIED:20230306T233104Z
UID:12547-1678820400-1678824000@www.sumairafoundation.org
SUMMARY:TSF Book Club | "Shifting Into High Gear" by Kyle Bryant
DESCRIPTION: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.\n\n\nShifting 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. Full of humor and reflection\, it’s a heroic journey of a man driven to reframe the language of disease through action and service. \nAs you travel with Kyle during two cross-country bike rides through the American West\, Texas\, the Southern States\, and finally to the shores of the Atlantic Ocean\, the grueling rides become a compelling backdrop for a series of lessons and ruminations which embrace an alternative worldview and provide practical solutions to everyday problems. A thrilling adventure story\, yes\, Shifting Into High Gear is also ultimately about helping readers reinterpret the conditions of their lives and learning how positive thinking\, purposeful connection\, and deliberate actions can help anyone reach beyond their limits and live a bolder and bigger life no matter what the circumstance.\n\nDeeply passionate and compassionate\, Kyle uses his amazing story to teach readers how to replace the handicapping language of “disability” with the agency to build a thriving and hopeful life. He bravely exposes the shadow-side of using disabling language and asks us to commit to a collective goal of understanding disease and its emotional impact and embrace the disabled population as equal individuals. In telling his story\, Kyle’s desire is that instead of viewing disease as a deficit\, we would see it as another state of being—simply as a life which strikes out on a different path.
URL:https://www.sumairafoundation.org/event/tsf-book-club-shifting-into-high-gear/
LOCATION:Virtual: United States\, United States
CATEGORIES:TSF Book Club,TSF Programming
ATTACH;FMTTYPE=image/png:https://www.sumairafoundation.org/wp-content/uploads/2023/01/March-2023-Book-Club-FB-EVENT-COVER_.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Paris:20230314T180000
DTEND;TZID=Europe/Paris:20230314T193000
DTSTAMP:20260405T190406
CREATED:20230216T183958Z
LAST-MODIFIED:20230216T183958Z
UID:12936-1678816800-1678822200@www.sumairafoundation.org
SUMMARY:Les MOGAD et NMOSD chez l’enfant et adolescent
DESCRIPTION: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. \nLes participants auront la possibilité de poser des questions au Dr Deiva en direct et en français. Le webinaire sera enregistré et disponible pour répondre sur le site Web et la chaîne YouTube de TSF. \nCet événement est soutenu par la subvention d’Horizon Therapeutics pour l’éducation des patients.
URL:https://www.sumairafoundation.org/event/les-mogad-et-nmosd-chez-lenfant-et-adolescent/
LOCATION:Virtual: France\, France
CATEGORIES:From The Experts
ATTACH;FMTTYPE=image/png:https://www.sumairafoundation.org/wp-content/uploads/2023/02/2023-From-the-Experts-1.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20230311T100000
DTEND;TZID=America/New_York:20230311T110000
DTSTAMP:20260405T190406
CREATED:20230116T190947Z
LAST-MODIFIED:20230303T202616Z
UID:12421-1678528800-1678532400@www.sumairafoundation.org
SUMMARY:TSF's Human Collective Project | Global Meetings
DESCRIPTION:We’re excited to bring NMOSD/MOGAD patients + caregivers from around the globe together for our global support group meeting in 2023! \nThese 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-3/
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=Europe/Amsterdam:20230308T193000
DTEND;TZID=Europe/Amsterdam:20230308T203000
DTSTAMP:20260405T190406
CREATED:20230116T185727Z
LAST-MODIFIED:20230207T171209Z
UID:12406-1678303800-1678307400@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-3/
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=Europe/Amsterdam:20230301T190000
DTEND;TZID=Europe/Amsterdam:20230301T200000
DTSTAMP:20260405T190406
CREATED:20230116T192112Z
LAST-MODIFIED:20230222T204910Z
UID:12437-1677697200-1677700800@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-3/
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-4.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Brussels:20230228T100000
DTEND;TZID=Europe/Brussels:20230228T180000
DTSTAMP:20260405T190406
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
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20230228T083000
DTEND;TZID=America/New_York:20230228T110000
DTSTAMP:20260405T190406
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=America/New_York:20230228T080000
DTEND;TZID=America/New_York:20230228T170000
DTSTAMP:20260405T190406
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;VALUE=DATE:20230228
DTEND;VALUE=DATE:20230301
DTSTAMP:20260405T190406
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:20230227T090000
DTEND;TZID=America/New_York:20230227T164500
DTSTAMP:20260405T190406
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;TZID=America/New_York:20230216T200000
DTEND;TZID=America/New_York:20230216T210000
DTSTAMP:20260405T190406
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:20230213T120000
DTEND;TZID=America/New_York:20230213T133000
DTSTAMP:20260405T190406
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:20230211T100000
DTEND;TZID=America/New_York:20230211T110000
DTSTAMP:20260405T190406
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=Europe/Amsterdam:20230208T193000
DTEND;TZID=Europe/Amsterdam:20230208T203000
DTSTAMP:20260405T190406
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=Europe/Amsterdam:20230208T190000
DTEND;TZID=Europe/Amsterdam:20230208T200000
DTSTAMP:20260405T190406
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=America/New_York:20230202T200000
DTEND;TZID=America/New_York:20230202T210000
DTSTAMP:20260405T190406
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/Brussels:20230126T170000
DTEND;TZID=Europe/Brussels:20230126T180000
DTSTAMP:20260405T190406
CREATED:20230109T005119Z
LAST-MODIFIED:20230109T005119Z
UID:12320-1674752400-1674756000@www.sumairafoundation.org
SUMMARY:Young People’s Webinar | Connecting MS\, NMOSD & MOGAD: Sharing Knowledge and Experiences to Strengthen Our Communities
DESCRIPTION: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). \nThese 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. \nThe webinar will focus on:\n– 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.\n– 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.
URL:https://www.sumairafoundation.org/event/young-peoples-webinar-connecting-ms-nmosd-mogad-sharing-knowledge-and-experiences-to-strengthen-our-communities/
LOCATION:Virtual: Danmark\, Denmark
CATEGORIES:Partner Events
ATTACH;FMTTYPE=image/jpeg:https://www.sumairafoundation.org/wp-content/uploads/2023/01/322736761_852812212465443_6239819172966124272_n.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Amsterdam:20230125T190000
DTEND;TZID=Europe/Amsterdam:20230125T200000
DTSTAMP:20260405T190406
CREATED:20230116T193923Z
LAST-MODIFIED:20230116T193937Z
UID:12434-1674673200-1674676800@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/tsfs-human-collective-project-danmark/
LOCATION:Virtual: Danmark\, Denmark
CATEGORIES:Support Group,TSF Events/Fundraisers
ATTACH;FMTTYPE=image/png:https://www.sumairafoundation.org/wp-content/uploads/2023/01/Denmark-The-Human-Collective-Project-Facebook-Cover-1.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20230119T200000
DTEND;TZID=America/New_York:20230119T210000
DTSTAMP:20260405T190406
CREATED:20221220T140602Z
LAST-MODIFIED:20230116T194153Z
UID:12097-1674158400-1674162000@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-3/
LOCATION:Virtual: Danmark\, Denmark
CATEGORIES:Support Group,TSF Events/Fundraisers
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:20230114T100000
DTEND;TZID=America/New_York:20230114T110000
DTSTAMP:20260405T190406
CREATED:20230112T225228Z
LAST-MODIFIED:20230112T225228Z
UID:12367-1673690400-1673694000@www.sumairafoundation.org
SUMMARY:TSF's Human Collective Project Global Meetings
DESCRIPTION:We’re excited to bring NMOSD/MOGAD patients + caregivers from around the globe together for our 1st global support group meeting of 2023! \nThese 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/
LOCATION:Virtual: Danmark\, Denmark
CATEGORIES:Support Group,TSF Events/Fundraisers
ATTACH;FMTTYPE=image/png:https://www.sumairafoundation.org/wp-content/uploads/2023/01/HCP-Global.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Amsterdam:20230111T193000
DTEND;TZID=Europe/Amsterdam:20230111T203000
DTSTAMP:20260405T190406
CREATED:20221220T133906Z
LAST-MODIFIED:20230103T151137Z
UID:12079-1673465400-1673469000@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/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. \nSince 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. \n 
URL:https://www.sumairafoundation.org/event/tsf-plauderstunde-hcp-germany/
LOCATION:Virtual: Danmark\, Denmark
CATEGORIES:Support Group,TSF Events/Fundraisers
ATTACH;FMTTYPE=image/png:https://www.sumairafoundation.org/wp-content/uploads/2022/12/2.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20230106T090000
DTEND;TZID=America/New_York:20230106T100000
DTSTAMP:20260405T190406
CREATED:20221221T125746Z
LAST-MODIFIED:20230103T151615Z
UID:12206-1672995600-1672999200@www.sumairafoundation.org
SUMMARY:Understanding Clinical Trials for MOGAD & the Importance of Patient Participation
DESCRIPTION: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. \nThis webinar will be recorded and available for replay on TSF’s Facebook and YouTube libraries. \nThis webinar is sponsored by UCB.
URL:https://www.sumairafoundation.org/event/understanding-clinical-trials-for-mogad-the-importance-of-patient-participation/
LOCATION:Virtual: Danmark\, Denmark
CATEGORIES:From The Experts
ATTACH;FMTTYPE=image/jpeg:https://www.sumairafoundation.org/wp-content/uploads/2022/12/320019904_674636397736521_7721156511967542261_n.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20230105T200000
DTEND;TZID=America/New_York:20230105T210000
DTSTAMP:20260405T190406
CREATED:20221220T140515Z
LAST-MODIFIED:20221220T140515Z
UID:12094-1672948800-1672952400@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/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. \nSince 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.
URL:https://www.sumairafoundation.org/event/tsfs-human-collective-project-meetings-2/
LOCATION:Virtual: Danmark\, Denmark
CATEGORIES:Support Group,TSF Events/Fundraisers
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:20221222T200000
DTEND;TZID=America/New_York:20221222T210000
DTSTAMP:20260405T190406
CREATED:20221220T140430Z
LAST-MODIFIED:20221220T140430Z
UID:12084-1671739200-1671742800@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/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. \nSince 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.
URL:https://www.sumairafoundation.org/event/tsfs-human-collective-project-meetings/
LOCATION:Virtual: Danmark\, Denmark
CATEGORIES:Support Group,TSF Events/Fundraisers
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:20221214T120000
DTEND;TZID=America/New_York:20221214T133000
DTSTAMP:20260405T190406
CREATED:20221212T210453Z
LAST-MODIFIED:20221220T142055Z
UID:11827-1671019200-1671024600@www.sumairafoundation.org
SUMMARY:SM\, NMOSD e MOGAD: Somiglianze e Differenze
DESCRIPTION: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. \nI 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. \nQuesto evento è reso possibile da una sponsorizzazione per la formazione ed il supporto ai pazienti di Horizon Therapeutics.
URL:https://www.sumairafoundation.org/event/sm-nmosd-e-mogad-somiglianze-e-differenze/
LOCATION:Virtual: Danmark\, Denmark
CATEGORIES:From The Experts
ATTACH;FMTTYPE=image/jpeg:https://www.sumairafoundation.org/wp-content/uploads/2022/12/315004859_2505543582953404_5586759427257825187_n.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20221213T200000
DTEND;TZID=America/New_York:20221213T210000
DTSTAMP:20260405T190406
CREATED:20221212T211117Z
LAST-MODIFIED:20221220T142019Z
UID:11821-1670961600-1670965200@www.sumairafoundation.org
SUMMARY:TSF Book Club | "Being Mortal" by Atul Gawande
DESCRIPTION: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.\nFrom Atul Gawande\, a book that has the potential to change medicine – and lives.\n\n\nThrough 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.
URL:https://www.sumairafoundation.org/event/tsf-book-club-being-mortal-by-atul-gawande/
LOCATION:Virtual: Danmark\, Denmark
CATEGORIES:TSF Book Club
END:VEVENT
END:VCALENDAR