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DTSTART;TZID=America/New_York:20230603T100000
DTEND;TZID=America/New_York:20230603T110000
DTSTAMP:20230530T142702Z
CREATED:20230116T191118Z
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UID:10000027-1685786400-1685790000@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 another global support group meeting! \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-6/
LOCATION:Virtual: United States\, United States
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:20230525T200000
DTEND;TZID=America/New_York:20230525T210000
DTSTAMP:20230207T173147Z
CREATED:20230116T194823Z
LAST-MODIFIED:20230207T173147Z
UID:10000041-1685044800-1685048400@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-11/
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:20230511T200000
DTEND;TZID=America/New_York:20230511T210000
DTSTAMP:20230207T173109Z
CREATED:20230116T194803Z
LAST-MODIFIED:20230207T173109Z
UID:10000040-1683835200-1683838800@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-10/
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:20230427T200000
DTEND;TZID=America/New_York:20230427T210000
DTSTAMP:20230207T172832Z
CREATED:20230116T194724Z
LAST-MODIFIED:20230207T172832Z
UID:10000039-1682625600-1682629200@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-9/
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:20230413T200000
DTEND;TZID=America/New_York:20230413T210000
DTSTAMP:20230207T172228Z
CREATED:20230116T194622Z
LAST-MODIFIED:20230207T172228Z
UID:10000038-1681416000-1681419600@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-8/
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:20230412T120000
DTEND;TZID=America/New_York:20230412T130000
DTSTAMP:20230411T204646Z
CREATED:20230327T142954Z
LAST-MODIFIED:20230411T204646Z
UID:10000084-1681300800-1681304400@www.sumairafoundation.org
SUMMARY:Pediatric MOGAD & NMOSD
DESCRIPTION:You’re invited to attend “Pediatric MOGAD & NMOSD” on Wednesday\, April 12th at 12:00 PM EDT featuring Dr. Brenda Banwell\, Chief of Child Neurology and Co-Director of the Neuroscience Center at the Children’s Hospital of Philadelphia\, Professor of Neurology and Pediatrics\, and Grace E. Loeb Chair in Neuroscience at the Perelman School of Medicine\, University of Pennsylvania. \nLive attendees will have the opportunity to ask Dr. Banwell questions in real time. This webinar will be recorded and available for replay on TSF’s Multimedia Library and YouTube channel. \nThis educational event is made possible through a patient education grant from Horizon Therapeutics.
URL:https://www.sumairafoundation.org/event/pediatric-mogad-nmosd/
LOCATION:Virtual: United States\, United States
CATEGORIES:From The Experts
ATTACH;FMTTYPE=image/png:https://www.sumairafoundation.org/wp-content/uploads/2023/03/Brenda-Banwell.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20230330T200000
DTEND;TZID=America/New_York:20230330T210000
DTSTAMP:20230329T004912Z
CREATED:20230329T004912Z
LAST-MODIFIED:20230329T004912Z
UID:10000085-1680206400-1680210000@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-6/
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;VALUE=DATE:20230329
DTEND;VALUE=DATE:20230330
DTSTAMP:20230327T143330Z
CREATED:20230131T173430Z
LAST-MODIFIED:20230327T143330Z
UID:10000063-1680048000-1680134399@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=America/New_York:20230316T200000
DTEND;TZID=America/New_York:20230316T210000
DTSTAMP:20230315T213219Z
CREATED:20230116T194549Z
LAST-MODIFIED:20230315T213219Z
UID:10000037-1678996800-1679000400@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:20230306T233104Z
CREATED:20230131T161203Z
LAST-MODIFIED:20230306T233104Z
UID:10000061-1678820400-1678824000@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=America/New_York:20230228T080000
DTEND;TZID=America/New_York:20230228T170000
DTSTAMP:20230221T214410Z
CREATED:20230221T214410Z
LAST-MODIFIED:20230221T214410Z
UID:10000073-1677571200-1677603600@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:20230227T090000
DTEND;TZID=America/New_York:20230227T164500
DTSTAMP:20230221T212855Z
CREATED:20230221T212529Z
LAST-MODIFIED:20230221T212855Z
UID:10000072-1677488400-1677516300@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:20230208T152156Z
CREATED:20230116T194450Z
LAST-MODIFIED:20230208T152156Z
UID:10000035-1676577600-1676581200@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
END:VCALENDAR