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/Argentina/Buenos_Aires
BEGIN:STANDARD
TZOFFSETFROM:-0300
TZOFFSETTO:-0300
TZNAME:-03
DTSTART:20220101T000000
END:STANDARD
END:VTIMEZONE
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/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:VEVENT
DTSTART;VALUE=DATE:20231028
DTEND;VALUE=DATE:20231029
DTSTAMP:20260414T113252
CREATED:20231019T171421Z
LAST-MODIFIED:20231019T173956Z
UID:15022-1698451200-1698537599@www.sumairafoundation.org
SUMMARY:Dia de la NMO 2023: Argentina
DESCRIPTION:La Asociación de Lucha contra la Esclerosis Múltiple (ALCEM)\, La Fundación Sumaira y NMO Argentina convocan a la actividad a realizarse el 28 de octubre de manera virtual y con inscripción previa. Su finalidad es ampliar información sobre esta rara patología y proporcionar formación sobre el tema. Está dirigido a profesionales de la salud\, pacientes y público interesado. \nEste evento será coordinado por los neurólogos Edgar Carnero Contentti y Verónica Tkachuk\, expertos en trastorno del espectro NMO. Además\, contará con la participación de profesionales argentinos especializados e invitados internacionales\, quienes abordarán temas relacionados con el diagnóstico\, tratamiento de síntomas\, nuevos tratamientos y futuro de la enfermedad\, entre otros. \nLa neuromielitis óptica es una patología desmielinizante autoinmune que afecta a los nervios ópticos y a la médula espinal mediante inflamación. El neurólogo francés Eugene Devic fue quien la describió inicialmente en el año 1894 en la ciudad de Lyon\, en su honor\, se conmemora esta enfermedad el 24 de octubre\, fecha de su nacimiento. \nEntre los síntomas más frecuentes se encuentran: disminución de la agudeza visual\, dolor crónico\, trastorno del sueño\, fatiga\, déficit neurológico\, trastornos sexuales\, entre otros. \nDesde ALCEM acompañan a pacientes con este tipo de enfermedades y resaltan la importancia de brindar información y capacitación sobre este tipo de patologías neurológicas\, ya que un diagnóstico oportuno puede permitir a los pacientes tener una buena calidad de vida.
URL:https://www.sumairafoundation.org/event/dia-de-la-nmo-2023-argentina/
CATEGORIES:Community Event,Partner Events,Patient Days
ATTACH;FMTTYPE=image/jpeg:https://www.sumairafoundation.org/wp-content/uploads/2023/10/RjrvaKQN5jEC9GZ565nXzGg93G2e2QsSz9BW8uEX.jpeg
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20230919
DTEND;VALUE=DATE:20230921
DTSTAMP:20260414T113252
CREATED:20230131T193033Z
LAST-MODIFIED:20230131T193033Z
UID:12572-1695081600-1695254399@www.sumairafoundation.org
SUMMARY:2023 RARE Patient Advocacy Summit
DESCRIPTION:Each year\, Global Genes convenes one of the world’s largest gatherings of rare disease patients\, caregivers\, advocates\, healthcare professionals\, researchers\, partners\, and allies at the RARE Patient Advocacy Summit.
URL:https://www.sumairafoundation.org/event/2023-rare-patient-advocacy-summit/
CATEGORIES:Partner Events,Summits
ATTACH;FMTTYPE=image/png:https://www.sumairafoundation.org/wp-content/uploads/2023/01/Global-Advocacy-Alliance-600px-1.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20230504
DTEND;VALUE=DATE:20230508
DTSTAMP:20260414T113252
CREATED:20230131T192051Z
LAST-MODIFIED:20230131T192051Z
UID:12563-1683158400-1683503999@www.sumairafoundation.org
SUMMARY:EMSP Annual Conference 2023
DESCRIPTION:We are glad to invite you to save the date for the EMSP Annual Conference 2023\, to be held under the theme of Social Policies between 4-7 May 2023 in Helsinki\, Finland. \nHeld as an in-person event co-hosted by the Finnish MS Society (Neuroliito)\, the conference will offer the latest MS developments\, expert insights\, and networking with the community. \nIf interested\, please pencil the following dates into your calendar: \nThursday\, 4th May 2023 – EMSP Annual General Meeting\nFriday\, 5th May 2023 – EMSP Annual Conference – Day 1\nSaturday\, 6th May 2023 – Day 2\nSunday\, 7th May 2023 – Young People’s Festival
URL:https://www.sumairafoundation.org/event/emsp-annual-conference-2023/
CATEGORIES:Partner Events
ATTACH;FMTTYPE=image/png:https://www.sumairafoundation.org/wp-content/uploads/2023/01/EMSP_LOGO_CMYK_square.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20230501
DTEND;VALUE=DATE:20230504
DTSTAMP:20260414T113252
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;VALUE=DATE:20230329
DTEND;VALUE=DATE:20230330
DTSTAMP:20260414T113252
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/Brussels:20230228T100000
DTEND;TZID=Europe/Brussels:20230228T180000
DTSTAMP:20260414T113252
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:20260414T113252
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;VALUE=DATE:20230228
DTEND;VALUE=DATE:20230301
DTSTAMP:20260414T113252
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=Europe/Brussels:20230126T170000
DTEND;TZID=Europe/Brussels:20230126T180000
DTSTAMP:20260414T113252
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=America/New_York:20221203T120000
DTEND;TZID=America/New_York:20221203T170000
DTSTAMP:20260414T113252
CREATED:20221212T211210Z
LAST-MODIFIED:20221212T211210Z
UID:11866-1670068800-1670086800@www.sumairafoundation.org
SUMMARY:SRNA Young Adults Group Meeting
DESCRIPTION:Join us for an online social hour hosted by Aidan M. for those in their 20’s and 30’s with ADEM\, AFM\, MOGAD\, NMOSD\, ON\, or TM! Connect with others and discuss what it’s like living with a rare neuroimmune disorder during the transitions of young adulthood. Ask questions\, share your stories\, or just listen – everyone is welcome. \nPlease think of this as a virtual coffee hour\, where we will have informal conversations and create community among younger folks with disorders under the SRNA umbrella. Come connect with others and discuss what it’s like living with a rare neuroimmune disorder. Ask questions\, share your stories\, or just listen – everyone is welcome.
URL:https://www.sumairafoundation.org/event/srna-young-adults-group-meeting/
LOCATION:Virtual: Danmark\, Denmark
CATEGORIES:Partner Events,Support Group
END:VEVENT
END:VCALENDAR