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BEGIN:VEVENT
DTSTART;VALUE=DATE:20230501
DTEND;VALUE=DATE:20230504
DTSTAMP:20260406T012656
CREATED:20230131T192742Z
LAST-MODIFIED:20230131T192742Z
UID:12565-1682899200-1683158399@www.sumairafoundation.org
SUMMARY:Rare Drug Development Symposium 2023: Collaborate: Go Farther\, Together
DESCRIPTION:Join us May 1-3\, 2023 in Philadelphia\, Pennsylvania for the RARE Drug Development Symposium 2023 \n\n\nCollaboration is the foundation of success in rare disease research.  Knowing who to work with\, what strategies to use\, and how to prepare for discussions can help you overcome barriers posed by small populations and limited funding.\n\nAt the Rare Drug Development Symposium (RDDS) 2023\, a partnership between Global Genes and the Orphan Disease Center of the University of Pennsylvania\, you’ll connect to  rare disease advocacy leaders\, researchers\, clinicians\, industry professionals and policy developers who will share their experience and provide you with models to help your community push forward. This 2-day\, in-person only event includes dynamic presentations\, followed by workshops and expert office hours that will enable you to:\nCreate A Comprehensive Research Strategy\nUnderstand the end-to-end process of drug discovery and development for rare disease and participate in a workshop where you’ll analyze your community’s potential and needs. \nLeverage the Power of Data\nWhat makes data valid and reliable? Once you have invested in a registry\, what partnership models can  help you move the needle toward translational research? \nUse AI for Drug Discovery and Repurposing\nFind out how artificial intelligence is being used to transform an often complex\, decades-long-mission into a more efficient process\, reducing the timeline and cost to bring therapies to patients. \nUnderstand Regulatory Considerations\nWhether your organization is local or global\, regulatory guidelines must be taken into account at each step. Learn how to navigate the requirements through case studies and expert advice. \nWho should attend: \n\nPatient Advocacy Group leaders\nPatients\nMembers of the rare disease community who want to learn more about the drug development process\, the unique ways this applies to the development of therapeutics for rare diseases\, and how they can engage with the process\nClinicians and researchers focused on rare disease therapeutic targets\n\nView 2022 Highlights \nTo learn more about the 2022 Symposium\, read the summary report here. We look forward to seeing you at the 2023 Symposium. \nA Year-Long Initiative in Rare Drug Development\nIn addition to activities surrounding the RARE Drug Development Symposium in June\, Global Genes is providing educational resources to help advocates and organizations become better equipped to work with researchers and industry partners throughout the drug development process. This includes: \n \nRare Research Roadmap: This toolkit was designed to help advocates\, individuals\, families\, and organizations better understand some of the potential routes to treatment and some of the key concepts that are part of these processes to work with researchers and industry partners throughout the drug development process. \n\n\n\nDownload Your Copy Of The Rare Research Roadmap And Toolkit\n\nWatch webinars and videos of experts that happened before and after the 2022 RARE Drug Development Symposium. \n\n2022 Webinar 1\n\n\n2022 Webinar 2\n\n\n2022 Webinar 3\n\n\nRDDS 2022: Value Of Collaboration\n\n\nRDDS 2022: Challenges For Rare Disease
URL:https://www.sumairafoundation.org/event/rare-drug-development-symposium-2023-collaborate-go-farther-together/
LOCATION:Sheraton Downtown\, 201 N 17th St\, Philadelphia\, PA\, 19103\, United States
CATEGORIES:Partner Events
ATTACH;FMTTYPE=image/png:https://www.sumairafoundation.org/wp-content/uploads/2023/01/Global-Advocacy-Alliance-600px-1.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20230429T120000
DTEND;TZID=America/New_York:20230429T130000
DTSTAMP:20260406T012656
CREATED:20230131T163136Z
LAST-MODIFIED:20230424T185651Z
UID:12552-1682769600-1682773200@www.sumairafoundation.org
SUMMARY:Cabaret for A Cause
DESCRIPTION:In celebration of NMOSD & MOGAD Awareness Months\, TSF is pleased to present “Cabaret for a Cause\,” a dance class taught by professional choreographers / show girls from a world-renowned cabaret in Paris\, France. \nEmma Castel and Deborah Lettieri will be teaching the class for both standing and seated attendees! \n100% of proceeds will be donated towards research for neuromyelitis optica spectrum disorder (NMOSD) and myelin oligodendrocyte glycoprotein antibody disorder (MOGAD).
URL:https://www.sumairafoundation.org/event/cabaret-for-a-cause/
LOCATION:Virtual: Global
CATEGORIES:TSF Events/Fundraisers
ATTACH;FMTTYPE=image/png:https://www.sumairafoundation.org/wp-content/uploads/2023/01/2023-Cabaret-for-a-Cause-2.0-Eventbrite-2.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20230427T200000
DTEND;TZID=America/New_York:20230427T210000
DTSTAMP:20260406T012656
CREATED:20230116T194724Z
LAST-MODIFIED:20230207T172832Z
UID:12468-1682625600-1682629200@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:20230427T160000
DTEND;TZID=America/New_York:20230427T170000
DTSTAMP:20260406T012656
CREATED:20230411T200034Z
LAST-MODIFIED:20230411T204403Z
UID:13541-1682611200-1682614800@www.sumairafoundation.org
SUMMARY:NMOSD y MOGAD\, Perlas en el Diagnóstico y Opciones para el Tratamiento
DESCRIPTION:Está invitado a asistir a la videoconferencia “NMOSD y MOGAD\, Perlas en el Diagnóstico y Opciones para el Tratamiento” el viernes 27 de abril a las 2:00 pm México / 4:00 pm Venezuela / 5:00 pm Argentina. Médicos especialistas de 3 diferentes países de Latinoamérica unen esfuerzos para abordar temas de interés común para todos. \n“Perlas en el Diagnóstico Diferencial (EM\, NMOSD\, MOGAD)”\, Dr. Edgar Carnero Contentti. \n“Tratamiento con Eculizumab\, Satralizumab\, Inebilizumab en NMO”\, Dra. Sarah Vargas. \n“Impactos Socioeconómicos de la Enfermedad y Acceso Entre Fronteras”\, Dr. José Flores Rivera. \nLos asistentes conectados a la videoconferencia tendrán la oportunidad de hacer preguntas a los tres doctores en tiempo real. Esta conferencia web se grabará y estará disponible para su reproducción\, tanto en la biblioteca multimedia\, como en el canal de YouTube de The Sumaira Foundation. \nEste evento educativo es posible gracias a una subvención para la educación del paciente de Horizon Therapeutics.
URL:https://www.sumairafoundation.org/event/nmosd-y-mogad-perlas-en-el-diagnostico-y-opciones-para-el-tratamiento/
LOCATION:Virtual: Global
CATEGORIES:From The Experts,TSF Programming
ATTACH;FMTTYPE=image/png:https://www.sumairafoundation.org/wp-content/uploads/2023/04/JFloresEContenttiSVargas.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Paris:20230425T200000
DTEND;TZID=Europe/Paris:20230425T213000
DTSTAMP:20260406T012656
CREATED:20230414T153146Z
LAST-MODIFIED:20230414T153146Z
UID:13587-1682452800-1682458200@www.sumairafoundation.org
SUMMARY:MOGAD : l'importance de la participation des patients aux essais cliniques
DESCRIPTION:Venez participer à notre prochain webinaire – MOGAD : l’importance de la participation des patients aux essais cliniques – le mardi 25 avril à 20 heures avec le docteur Romain Marignier\, professeur de neurologie et responsable du centre MIRCEM de Lyon. \nIl partagera avec nous les dernières actualités sur les essais cliniques en cours pour les patients vivant avec la MOGAD en direct de l’American Academy of Neurology. Nous discuterons avec lui de l’importance de la participation des patients à la recherche clinique et aux essais de nouvelles thérapies. \nVous pourrez poser des questions au Pr Marignier en direct.\nCe webinaire sera enregistré et pourra être retrouvé sur la chaîne YouTube de The Sumaira Foundation\, la bibliothèque Facebook et la galerie multimédia du site web de TSF. \nCe webinaire est rendu possible grâce au soutien institutionnel du laboratoire UCB.
URL:https://www.sumairafoundation.org/event/mogad-limportance-de-la-participation-des-patients-aux-essais-cliniques/
LOCATION:Virtual: France\, France
CATEGORIES:TSF France,TSF Webinar
ATTACH;FMTTYPE=image/jpeg:https://www.sumairafoundation.org/wp-content/uploads/2023/04/unnamed.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Africa/Johannesburg:20230425T180000
DTEND;TZID=Africa/Johannesburg:20230425T190000
DTSTAMP:20260406T012656
CREATED:20230418T220147Z
LAST-MODIFIED:20230424T182135Z
UID:13595-1682445600-1682449200@www.sumairafoundation.org
SUMMARY:HCP South Africa
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.
URL:https://www.sumairafoundation.org/event/hcp-south-africa/
LOCATION:Virtual: South Africa\, South Africa
CATEGORIES:Support Group,TSF Programming
ATTACH;FMTTYPE=image/png:https://www.sumairafoundation.org/wp-content/uploads/2023/04/SOUTH-AFRICA-The-Human-Collective-Project-Facebook-Cover-1200-×-676-px.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20230422T200000
DTEND;TZID=America/New_York:20230422T230000
DTSTAMP:20260406T012656
CREATED:20230118T163153Z
LAST-MODIFIED:20230207T175611Z
UID:12508-1682193600-1682204400@www.sumairafoundation.org
SUMMARY:6th Annual TSF Gala
DESCRIPTION:You are invited to attend The Sumaira Foundation’s \n6th Annual Gala\nSaturday\, April 22\, 2023 at 8 PM at The Newbury Boston\nThis event is black-tie optional. \nWe’ve set an ambitious goal to raise \n$375\,000\nClick here to view the research we’ve been able to fund thanks to you!
URL:https://www.sumairafoundation.org/event/6th-annual-tsf-gala/
LOCATION:The Newbury Boston\, 1 Newbury St\, Boston\, MA\, 02116\, United States
CATEGORIES:TSF Events/Fundraisers
ATTACH;FMTTYPE=image/jpeg:https://www.sumairafoundation.org/wp-content/uploads/2023/01/TSF_GALA_POSTER_1620x924_Link.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Paris:20230421T200000
DTEND;TZID=Europe/Paris:20230421T213000
DTSTAMP:20260406T012656
CREATED:20230411T203920Z
LAST-MODIFIED:20230411T203920Z
UID:13545-1682107200-1682112600@www.sumairafoundation.org
SUMMARY:NMOSD et MOGAD: échanges autour de la vie intime\, affective et sexuelle
DESCRIPTION:Avec bienveillance\, ouverture d’esprit\, empathie\, venez échanger avec TSF France et Delphine Mutot sur ce qu’est pour vous la vie intime\, affective et sexuelle. Sentez-vous libre de poser toutes les questions que vous souhaitez\, et d’utiliser les mots avec lesquels vous êtes à l’aise. Pas de chichi entre nous! \nRetrouvez-nous le 21 avril 2023 à 20 heures. \nCet événement est soutenu par les subventions d’Horizon Therapeutics et Alexion pour l’éducation des patients.
URL:https://www.sumairafoundation.org/event/nmosd-et-mogad-echanges-autour-de-la-vie-intime-affective-et-sexuelle/
LOCATION:Virtual: France\, France
CATEGORIES:From The Experts,TSF Programming
ATTACH;FMTTYPE=image/png:https://www.sumairafoundation.org/wp-content/uploads/2023/04/Delphine-Mutot.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20230415T100000
DTEND;TZID=America/New_York:20230415T110000
DTSTAMP:20260406T012656
CREATED:20230116T191016Z
LAST-MODIFIED:20230329T005008Z
UID:12423-1681552800-1681556400@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 meetings 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-4/
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:20230413T200000
DTEND;TZID=America/New_York:20230413T210000
DTSTAMP:20260406T012656
CREATED:20230116T194622Z
LAST-MODIFIED:20230207T172228Z
UID:12466-1681416000-1681419600@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=Europe/Amsterdam:20230412T193000
DTEND;TZID=Europe/Amsterdam:20230412T203000
DTSTAMP:20260406T012656
CREATED:20230116T185826Z
LAST-MODIFIED:20230207T172129Z
UID:12408-1681327800-1681331400@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-4/
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:20230412T190000
DTEND;TZID=America/New_York:20230412T203000
DTSTAMP:20260406T012656
CREATED:20230312T140038Z
LAST-MODIFIED:20230316T151900Z
UID:13212-1681326000-1681331400@www.sumairafoundation.org
SUMMARY:Meet the Author | Kyle Bryant\, "Shifting Into High Gear"
DESCRIPTION:TSF is pleased to invite you to an exclusive “Meet the Author” fireside chat between Sumaira and Kyle Bryant\, an author\, athlete\, speaker\, and spokesperson for Friedreich’s Ataxia Research Alliance (FARA). \n“Shifting Into High Gear” charts the course of Kyle’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. \nAttendees will have the opportunity to ask Kyle questions in real-time. Registration is required.
URL:https://www.sumairafoundation.org/event/meet-the-author-kyle-bryant-shifting-into-high-gear/
LOCATION:Virtual: Global
CATEGORIES:Meet The Author
ATTACH;FMTTYPE=image/png:https://www.sumairafoundation.org/wp-content/uploads/2023/03/Meet-the-Author-March-2023-1.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20230412T120000
DTEND;TZID=America/New_York:20230412T130000
DTSTAMP:20260406T012656
CREATED:20230327T142954Z
LAST-MODIFIED:20230411T204646Z
UID:13426-1681300800-1681304400@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=Europe/Amsterdam:20230405T190000
DTEND;TZID=Europe/Amsterdam:20230405T200000
DTSTAMP:20260406T012656
CREATED:20230116T192135Z
LAST-MODIFIED:20230222T205001Z
UID:12439-1680721200-1680724800@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-4/
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=America/North_Dakota/Center:20230401T090000
DTEND;TZID=America/North_Dakota/Center:20230401T160000
DTSTAMP:20260406T012656
CREATED:20230307T134147Z
LAST-MODIFIED:20230329T223017Z
UID:13166-1680339600-1680364800@www.sumairafoundation.org
SUMMARY:TSF's Patient Day for NMOSD/MOGAD in Dallas
DESCRIPTION:TSF is inviting all NMOSD/MOGAD patients\, caregivers\, friends and family in Texas to join us for an exclusive meetup!\nIn collaboration with Dr. Benjamin Greenberg at UT Southwestern Medical Center\, The Sumaira Foundation is organizing a special event dedicated to NMOSD/MOGAD patients\, caregivers and clinicians on Saturday\, April 1st\, 2023 at the Marriott Dallas Uptown. \nPLUS! We’ll be joined by special guest and celebrity chef\, Christine Ha! Christine was diagnosed with NMOSD after experiencing severe vision loss in 2003. Christine was the first blind contestant on MasterChef and the winner of its third season in 2012. In 2023\, Christine is a proud chef\, writer and TV host. \nTSF’s goals for this event include: \n\nmeet local NMOSD/MOGAD patients\, caregivers and clinicians in the Texas region\nprovide updates on the latest research and findings\nfacilitate connections and meaningful discussions for the NMOSD/MOGAD community\nenable patients/caregivers to ask experts questions in real time\nlearn more about The Sumaira Foundation’s mission and ways to get involved to illuminate the darkness of NMOSD/MOGAD\n\nJoin us for a day of connection\, education and community. This is a free event with heavy hors d’oeuvres and an open bar. \nWe’re excited to meet you! \nHugs\, Sumaira
URL:https://www.sumairafoundation.org/event/tsfs-patient-day-for-nmosd-mogad-in-dallas/
LOCATION:Marriott Uptown Dallas\, 3033 Fairmount St\, Dallas\, TX\, 75201\, United States
CATEGORIES:Community Event,Patient Days
ATTACH;FMTTYPE=image/png:https://www.sumairafoundation.org/wp-content/uploads/2023/03/TSF-Patient-Day-for-NMOSDMOGAD-in-Dallas-April-1-2023.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Amsterdam:20230331T190000
DTEND;TZID=Europe/Amsterdam:20230331T200000
DTSTAMP:20260406T012656
CREATED:20230321T203954Z
LAST-MODIFIED:20230324T174500Z
UID:13361-1680289200-1680292800@www.sumairafoundation.org
SUMMARY:Het Human Collective Project
DESCRIPTION:Op dinsdag 31 maart om 19:00 organiseert de Sumaira Foundation de eerste Nederlands en Vlaamse online bijeenkomst voor mensen met NMOSD of MOGAD en hun familieleden en/of dierbaren.\n\nU bent van harte welkom om deel te nemen en ervaringen uit te wisselen en elkaar te ondersteunen in een veilige omgeving.\n\nAanmelden voor deze bijeenkomst kan via: ZOOM
URL:https://www.sumairafoundation.org/event/het-human-collective-project/
LOCATION:Virtual: Amsterdam\, Netherlands
CATEGORIES:Support Group
ATTACH;FMTTYPE=image/png:https://www.sumairafoundation.org/wp-content/uploads/2023/03/HCP-Dutch-1.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20230330T200000
DTEND;TZID=America/New_York:20230330T210000
DTSTAMP:20260406T012656
CREATED:20230329T004912Z
LAST-MODIFIED:20230329T004912Z
UID:13439-1680206400-1680210000@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:20260406T012656
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:20260406T012656
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:20260406T012656
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:20260406T012656
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:20260406T012656
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:20260406T012656
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:20260406T012656
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:20260406T012656
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:20260406T012656
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:20260406T012656
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:20260406T012656
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:20260406T012656
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
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DTSTART;VALUE=DATE:20230228
DTEND;VALUE=DATE:20230301
DTSTAMP:20260406T012656
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
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